Finnish representative speaking

Finnish Professionals Visit Catalonia to Observe High-Quality Services

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The local organization working on the deafblindness field APSOCECAT hosted the exchange program concerning good practice in the world of disability

May 8, 2015

Representatives of Finnish disability agencies visited Catalonia with the objective of getting to know the work method of different centres known for their high quality and excellence. The visitors represented the Municipal Federation of Vaalijala and the Foundation for Intellectually Disabled People in the region of Savo (SAVAS). Around 25 people formed the group.

The visit organized by APSOCECAT had programmed three specific centres to see known for their high level of practice, the first being the Association Sant Tomàs an organization dedicated to the assistance of intellectually disabled people, and their families. This covers the whole region of Osona, at 70 Km to the north from Barcelona city. The visitors could see, first hand, how the work service “Eina” and the work centre Tac Osona functioned, and check the labour integration of disabled people, in the gardening and cooking field.

The second organization was Ampans Foundation in Manresa, at 52 Km to the northwest from Barcelona city, where the visitors saw the installations of the occupational therapy centre called La Llum. Also seen was the school Jeroni de Moragas, one of the most important resources for special education in Catalonia, different residential centres, and The Garden centre.

On the second day the group visited the Ave Maria Foundation in Sitges, at 24 Km from Barcelona in the Mediterranean coast, which is as well dedicated to the assistance and help of disabled people. They have an interesting network of assistance that includes a centre of legal issues named Entitat d’incapacitació Garraf Legal and a robotic centre called Institut de Robòtica.

APSOCECAT undertook the final session of the presentation regarding the differences between Finland and Catalonia in dealing with disability. On behalf of the Finnish, Jouko Hamalain, director of Savas, and Ilkka Jokinen, general manager of the Federation Municipal Vaalijala participated. On behalf of the Catalonians were representatives of the Welfare Minister, the Province of Barcelona and of the Institute of People with Disability of Barcelona. There were also presentations of the organizations visited and of the APSOCECAT as an association working on the disability field.

The visitors commented on the high quality of the centres they visited. The difficulties they confront were highlighted and exposed how the good practices they recently knew could help to find alternative solutions. The sessions gave way to possible opportunities for network collaboration. 

Group photo with the Finnish professionals

Finnish and Catalonian representatives at the final session at the APSOCECAT premises


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The Moscow international conference logo

EDbN present at the international conference of deafblindness in Moscow

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Challenges of the deaf-blind: experience, objectives, perspectives”, the International Conference held a meeting of the most, distinctive, important representatives of the deafblind.

The aim of the conference was to bring together the best practices of work with the deafblind, to identify the ways for future studies and develop specific policy recommendations.

April 17, 2015

The most recent international event concerning the deafblindness situation occurred on the 15th and 16th of April in Moscow. The international conference «Challenges of the deaf-blind: experience, objectives, perspectives”, was organized by the Deaf-blind Support Found. There were representatives of the most relevant entities of deafblindness. Ricard López, president of EDbN participated as an invited speaker.

The inaugural session was undertaken by Dimitry Polikanov, President,  Deaf-blind Support Found. Also present were Mikhail Terentyev (Russia), Vice-chairman, the State Duma for labour, social policy and veteran affairs (Russia), Frank Kat, Director, The Royal Dutch Kentalis, (Netherlands), James Thornberry, Director, Sense International (Great Britain) and Andrey Nikitin, General Director, Agency of Strategic initiatives (Russia).

A number of round tables were established. The round table «Adaptive Physical Education (APE)» was dedicated to show assistive practices that distinct Russian organizations regarding disability practice carry out

The round table «Definition the Deaf-blindness Criteria: The Deaf-blind Census» involved international speakers. Of special interest was the speech made by Elena Geleskul conducting «Russia-wide deaf-blind census by Deaf-blind Support Fund». Ricard López conducted the conference, «Census of the Deafblind: EU and EEUU status» where the results of the recent project, «European Deafblind Indicators» were presented, as well as the differences with the EEUU census methodologies. The European census found an estimated 3 million deafblind people in Europe.

The program also included the round tables: «Rehabilitation through the Arts», «Training specialists for working with the deaf-blind» and «The medicine of the future», among others. All the interventions were carried out by prominent, international organizations, which were given the opportunity to put together the priorities of the deafblind and establish the basis for an international network. EDbN will look for ways of capitalizing on the potential of recent contacts.

The Deaf-blind Support Found is an NGO established by the Agency for Strategic Initiatives (ASI) to assess the deaf-blind population in Russia, take into account their needs and provide for improving their quality of life, including their integration in social and professional activities.

Deafblindness representatives gathererd in Moscow

Amid Amedi, neurobiologist, Ricard López,  President of the European Deafblind Network, Albin Adam, Deputy Reagional Lead Hephata Fund, Pavel Osipov, Head Enabling Technologies Program of the Deaf-blind Support Found, James Thornberry,  Director, Sense International, Frank Kat, Director of The Royal Dutch Kentalis


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The words We Can Be Connected in different colours

We Can Be Connected

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 Communication is essential for staying healthy, holding a job, managing a household and participating in the community


March 3, 2015

Modern technology has vastly expanded the way most people communicate through voice, data and video services. But for people who have combined vision and hearing loss, special equipment may be necessary to make a phone call, send an email or access the Internet.

The European Deafblind Equipment Distribution Program will ensure that low-income individuals who have combined hearing and vision loss can access telephone, advanced communications, emergency plans and information services.

We Can Be Connected’ is a project whose initial objective is to apply for funding to the European Commission in order to acquire and distribute the necessary equipment which will provide and guarantee accessibility to communication and information amongst deafblind people with a low level of income across Europe. 


To make contact click here


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This Thursday 2 April, the disability movement will be at Geneva to meet the UN Committee and discuss its concerns on how the EU implements the UN Convention on the Rights of Persons with Disabilities (UN CRPD).

The EU has ratified the UN Convention in 2010 making it the 1st international human rights treaty that has ever been ratified by a regional organisation. By ratifying the UN Convention, the EU has agreed to take important steps for equal rights and full inclusion of persons with disabilities in all areas of lifeFind more about what the UN Convention foresees at the UN website.

Last year, the EU had to submit a report to the UN Committee to explain what actions it has taken in favor of its 80 million citizens with disabilities. On 2 April 2015, the UN Committee in Geneva will examine for the first time the report by the EU. Find more about the EU review process on EDbN website .

To give the view of citizens with disabilities and cover gaps that the EU report has, EDF prepared the EDF Alternative Report on the implementation of the UN Convention by the EU, based on the expertise of its members all around Europe, civil society organisations and other stakeholders.

Download EDF Alternative Report here (in accessible PDF format with Easy-To-Read translation)


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Representatives of EDF and IDDC with the European Commissary



Commissioner Mimica commits to support disability-inclusive development within the EU 

March 9,  2015 

Representa­tives of the European Disability Forum (EDF) and of the International Disability and Develop­ment Consortium (IDDC) met in Brussels with European Com­mi­ssioner for Internatio­nal Cooperation and De­ve­lopment Mimica to discuss European deve­lopment cooperation and the rights of persons with disabilities.

IDDC and EDF reflected on the progress which has been made in recent years in advancing the rights of persons with disabilities in EU external action.

Commisisoner Mimica said that concrete actions need to be taken now by EU institu­tions and delegations to ensure that all of EU development cooperation is truly inclusive and accessible.

More information: Commissioner Mimica commits to support disability-inclusive development within the EU 



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Meeting with the Employment, Social Affairs, Skills and Labour Mobility European Commissioner, Marianne Thyssen



The Board of the European Deafblind Network (EDbN) goes to Brussels to meet the European Commissioner for Employment and Social Affairs, Marianne Thyssen

March 4, 2015

The discriminatory situation of the deafblind people in Europe was one of the main issues of the meeting hold last 3erd of March in Brussels between the board of the European Deafblinf Network (EDbN) and the European Comissioner of Employment, Social Affairs, Skills and Labour Mobility, Marianne Thyssen

Ramón Tremosa, Member of the European Parliament (MEP) by Convergència i Unió (CiU), accompanied the deafblindness representatives: Ricard López and Lucy Drescher, president and vice-president, respectively, of EDbN, together with Sonja Van de Molengraf and Helle Buelund, members of EDbN too. 

The meeting established a first high level contact in which the needs of deafblindness were exposed. This collective is estimated to be almost 3 million people in Europe and their attention is at a clear disadvantage compared with other collectives. The difficulties they face of accessing communication and information are the biggest obstacles of the deafblind people. There is no European strategy leaded to solve this situation or to care specifically about such a significant collective.

The board of EDbN proposed to start working lines oriented to the identification of this collective, as well as the inclusion of deafblindness in the European Agenda with the same conditions that other disabilities have.

This initiative also has the support of several MEPs from different countries in Europe. Click here for more information about MEPs supporting Deafblindness.


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European Conference on Information and Communication Technologies


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As a member of the EDF Board, the EDbN representative, Ricard López, actively attended the meeting representing almost 3 million persons with Deafblindness

February 23, 2015

The disability movement in Europe gathered this weekend in Jurmala, Latvia for EDF’s Board meeting. Before the meeting, a European conference on information and communication technologies for persons with disabilities was organised bringing together more than 150 participants from all around Europe.


Read more: 80 million persons with disabilities call for accessible information and communication technologies  in Latvia (EDF website)


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Pelgrims in the Way of Saint James



February 10, 2015

The Way of St. James (Camino de Santiago) is a spiritual journey that pilgrims of all backgrounds have traversed for over a thousand years. Pilgrims walk the Way for various reasons: some to seed penance, others enlightenment, others for a sense of adventure.

Several deafblind people will take up this challenge next September, a week-challenge that calls for visibility of the deafblind. This is an open proposal to deafblind people and their interveners, on the one hand, and relatives of the deafblind and professional volunteers, on the other hand. We consider two different options: by bike and on foot.

For those who prefer to take up this challenge by bike, you can come along with your bike or tandem, and we are planning to cycle a distance of 300 km. We are going to meet in Oviedo between the 12th and the 13th of September 2015 in order to start our long walk. For those who prefer walking, we will meet in Sarria, which is a strategic location, with good travel connections because of its coach and train stations. We will walk 100 km, until we reach the Cathedral of Santiago de Compostela.

[caption id="attachment_167" align="alignright" width="314"]A deafblind person and his intervenerA deafblind person and his intervener[/caption]

Once there, the bishop will be waiting for us to celebrate that we overcame the challenge. Our arrival is planned to be on the 19th at 12pm. Both the walkers and the cyclists, deafblind or not, will reach the Cathedral together in order to get the Credential of the Camino de Santiago, a document given to walkers to certify them as pilgrims to record their passage through distinct locations along the routes.


if you are a deafblind relative, a volunteer or a professional in this field and you want to take part in this activity, please contact EDbN for more information:


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Red and White Cane



February 15, 2015

We are currently working on another project concerning deafblind transport and movement in public spaces, streets and crossings: the red and white cane. This is a white cane with red stripes of 100mm. The deafblind people are using white sticks, which indicates a blind person. But due to the insufficient differentiation, the deafblind people often confront misunderstandings, when for example they do not react to drivers’ appeals at the crossings, and it is even dangerous for the deafblind person.

We want to introduce the red and white cane in our society as a tool to improve the safety of deafblind people in order to enrich their independent life and make them visible to drivers and other pedestrians. We believe that the red and white cane will bring to the deafblind community increased self-confidence and respect from the public.

Therefore, we have two main tasks: to achieve one standard red and white cane and to obtain support to associate this cane with deafblindness. In order to achieve this last aim, a campaign will be launched at four levels: local, central and autonomous communities’ governments, and the European Union.


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MEPs Supporting Deafblindness



January 30, 2015

Once the ‘European Deafblind Indicators’ project was completed, EDbN presented the results and the objectives of this project to all the MEPs who in the last legislature were part of the Disability Intergroup. From the very beginning we had the backup of 20 of them, and that number grew to 22, which is where we stand now. They have supported EDbN in the petition of having a meeting with Commssioner Marianne Thyssen, which will be held next 3rd of March.

These MEPs are the following: 


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European Conference on Deafblindness in Barcelona



June 20, 2014

The European Deafblind Indicators project website project was developed from September 2012 to September 2014 by nine deafblind organizations from eight EU Member States. All of the individual members of the pro¬ject group are part of the European Deafblind Network (EDbN) and it is through this Network that the project was conceived and developed.

This project aims to create a common European framework for the assessment of institutional models of care for the deafblind based on indicators created ex novo: the Indicators of Deafblindness Equality in Europe (IDbEE). Its importance lies in the certainty that great differences in the degree of attention exist between the various European States.

The outcome of this project was nowhere near enough data is collected about deafblindness, and the extent of deafblindness is seriously underestimated. As most organizations do not cater for the specific needs of deafblind people, there are not enough specific deafblind services in most states. Communication support and personal assistance systems for deafblind people in Europe are sketchy at best and inadequate although it withholds their rights to health and social care, family life and leisure. As long as there is better support from the governments, change is possible. Therefore, it is imperative that on a European level we make a noise.


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EDbN with Ms Ulvskog meeting in the EP



January 20, 2015

On the 20th of January a meeting was held in the European Parliament between Ms Ulvskog, vice-president of the Committee on Employment and Social Affairs of the European Parliament, Javi López, Spanish MEP, Jutta Steinruck, German MEP, and Ricard López, president of EDbN, and four EDbN members: Lucy Drescher (Sense), Helle Buelund (CDH), Sonja van de Molegraft and Frank Kat (Kentalis).

As deafblind people have specific needs, which have been studied in the ‘European Deafblind Indicators’ project, we made a noise about it in the European Parliament.

We explained the current situation of deafblind people in Europe and the lacks this community has. We stated the social emergency of this community in Europe: there are 3 million deafblind people, 1.8 million of whom are elderly, and they have no guaranteed access to information and communication. As there is no visibility of this group, there is a lack of recognition, statistics and census, and there is a need of sharing knowledge by a European Resources Centre. The ‘We Can Be Connected’ project was also exposed, which initial objective is to apply for funding to the European Commission. We showed our interest in achieving that EUROSTAT and FRA agencies develop right statistics data on deafblindness and making the census compulsory.

EDbN requested a budget and their support to run the ‘We Can Be Connected’ project and a European Resources Centre and the chance to organise a hearing with the Committee of Employment and Social Affairs.

The outcome of this meeting was really positive, as Ms Ulvskog, Ms Juta and Mr López were very receptive to our requests. We are currently in touch with them and waiting for their proposals.


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Hold hands



Zagreb, Croatia – FEBRUARY 9th 2015

Febrero 13, 2015

The President of the Republic of Croatia annually honours meritorious individuals, Croatian and foreign nationals, organizations and legal entities with decorations and awards for their outstanding achievements, extraordinary contributions and true excellence in one’s career accomplishments.

On Monday, February 9th, during a traditional ceremony that was held at the Presidential Palace of the President of the Republic of Croatia, Dr. Ivo Josipovic, has awarded the President of EDbU and Croatian Association of Deafblind Persons, “Dodir”, Sanja Tarczay, Ph.D., the honour of the ORDER OF THE CROATIAN STAR WITH THE EFFIGY OF KATARINA ZRINSKA, an honour given for the extraordinary services for healthcare, social welfare and the promotion of social moral values, recognition and creation of an environment for the quality of life of deafblind persons in Croatia and the world. She is the first deafblind person in Croatia to receive this honour.


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Hold hands


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This condition will provide the necessary steps to explain the requirements and needs of Deafblindness to all the members of the European institutions

August 27, 2014

The European Deafblind Network (EDbN) has recently received the confirmation of the access rights to the European Parliament premises. The accredited status will allow our representatives of Deafblindness greater networking opportunities to contact all the members of the European Parliament (MEP).


In addition to the ease of access and movement, this new condition will allow to present the specific care requirements of Deafblindness directly to the appropriate authorities. Besides, it grants the right to be informed about regulatory changes made in employment areas, social affairs, transport, tourism, culture and education.

Previously, EDbN had been admitted to the Joint Transparency Register, the identification system of organizations linked to European institutions. The Joint Transparency Register is a mechanism created and managed by the Parliament and European Commission so as to provide accurate information about all the people involved in activities influencing UE decisions. It offers a single conduct code that makes organizations to follow the rules and respect the ethical principles.

The accredited status is a satisfied reason as it will enhance the needs of Deafblindness people facing the decision centers of the European institutions. 


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European Conference on Deafblindness in Barcelona

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The European Deafblind Indicators Project will finish with an open day conference on June 20th 

April 16, 2014

After two years working on the European Deafblind Project, for Lifelong Learning Programme of the European Commission, the project is getting to an end. The last meeting will be held in Barcelona and offering an open day conference next 20th June. It is expected the attendance of European and Spanish authorities, as well as professionals working on disabilities, from the social services and bound to deafblindness. 

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EDF New Logo


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On 11 February 2014, EDF presented its manifesto on the EU elections 2014 at the European Parliament. The event was organised in cooperation with the European Parliament Disability Intergroup and gathered a lot of MEPs; all of them expressed their full endorsement to the key priorities of EDF manifesto.

MEP Adam Kosa, who is also the President of the European Parliament Disability Intergroup, opened the event together with the Vice-President of the Intergroup, MEP Richard Howitt.

“In the next term of the European Commission we need a fully-fledged directorate on disability issues and we hope that we will achieve that. It is time to bring a real change to the lives of persons with disabilities”, said MEP Adam Kosa.  

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European Commission

European Commission announces Access City Award Winner 2014: Gothenburg!

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On the occasion of the European Day for people with disabilities (3 December) the European Commission announced that Gothenburg is the winner of the Access City Award 2014. Gothenburg’s commitment to increasing accessibility to transport, housing, work and employment is a good example that other European cities could follow in the future. Priority is given to people with disabilities when accessible homes become available. On the employment front, some 300 workplaces are being equipped with personal aids each year. The city is also systematically working on improving public facilities, with concrete actions to make amusement parks, playgrounds and the local university more accessible.

The second prize went to Grenoble (France) and the third to Poznan (Poland) – both cities having exhibited remarkable progress in terms of accessibility to transport, education, accommodation, shopping, culture, sports, tourism and employment.

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Viviane Redding EU Vice-president and Adam Kósa, MEP

European Union Real-Time Sign Language Application by Adam Kósa MEP and Werner Kuhn MEP

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This pilot project established by Ádám Kósa MEP and Werner Kuhn MEP aimed at easing the lives of one million deaf sign language users in Europe.

The goal of this project is to develop a service concept and later a technology platform and service that can be used by any deaf or hard of hearing citizen within the European Union to assist them with real-time live sign language interpretation by a certified sign language interpreter or/and a real- time captioning service in order to enable independent communication with the institutions of the European Union, such as the European Parliament or the European Commission.

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Left to right: Ms Dorvilé Juodkaité, President of the Lithuanian National Forum of the Disabled; Mr Yannis Vardakastanis, EDF President; Ms Algimanta Pabedinskiene, Minister of Social Security and Labour of Lithuania.


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Vilnius, 16-17 November 2013 | The European Disability Forum met this weekend in Vilnius, Lithuania, gathering together representatives of its member organisations all around Europe, as well as representatives of the Lithuanian Republic and European institutions. On the first day of the Board meeting, a European conference took place focusing on: ‘Disability and sustainable development. A perspective from the UN Convention on the Rights of Persons with Disabilities’.

Opening the conference, Dovilé Juodkaité, President of the Lithuanian Forum for the Disabled welcomed this event as the only one focusing on the rights of persons with disabilities within the three pillars: social, economic and environmental of sustainable development and in the frame of the programme of the Lithuanian Presidency of the EU.

EDF President, Yannis Vardakastanis, underlined the importance of inclusive development. “It gets more and more understandable that inclusive development cannot be considered as such, unless it takes into account and on board persons with disabilities. Development that does not include persons with disabilities is a direct violation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD). Development should affect every citizen in society without any exclusion or discrimination”, said Yannis Vardakastanis.

Speaking also at the opening of the conference, the Lithuanian Minister of Social Security and Labour, Algimanta Pabedinskiene, stressed the Lithuanian Presidency’s commitment to a sustainable growth for Europe with the inclusion and active participation of persons with disabilities.

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Fesoce new Deafblind campaign

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November 6, 2013

Federacion Española de Sordoceguera (Deafblind Spanish Federation) launched today its brand new fund raising campaign in Barcelona, Spain. This campaign aims to promote the awareness of deafblind as a unique disability, to influence for suitable facilities around the nation and as a way to raise the necessary funds to support families, professionals and deafblind people.

FESOCE is a Spanish organization that gathers all country´s deafblind associations to assess, assist and represent all those individuals affected by deafblind around the country.

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European Platform Meeting

The 19th of June 2013 was the date chosen by the European Platform on Deafness, Hard of Hearing, and Deafblindness to debate the Board´s current progresses within the European Disability Forum. Discussing the important details concerning the latest developments of the European Disability Forum (EDF) Board Elections and the strategy regarding the draft of the

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The secretariat: Bronte and Elvira, and President: Gill Morbey

Deafblind International Board Meeting

Deafblind International President Gillian Morbey at DBI Board meeting DbI Board met the day before the start of the 8th Deafblind European Conference to discuss a serious of aspects concerning its structure and projects. Gillian Mobey, DbI President, explain all those present at the meeting how much the association has achieved and advanced in the

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EDbN 2013 General Assembly


October 18, 2013

On the 24th of August EDbN was able to explain its 2012-2014 working plan at the recent 8th Deafblind European Conference meeting at Lille, France, where it was finally approved.

Its proposal for the rest of 2013 and the first half of the following year consist of four major points: Finding out a definition of the Charter of Services for the members, to increase the number of supporters, to begin with the arrangements for the next EDbN summit in Barcelona and to contribute to DbI conferences and other events as well as to take an active roll in the publishing of DbI Review.

EDbN explained how will they concentrate its external strategy on working at European government level, influencing the European Parliament, the European Commission and EDF and looking to ensure all deafblind people needs are taken into account when time comes to legislate and dictate the future continental policies. EDbN has shown to be an ideal platform from where to influence all European institutions into thinking about deafblind individuals’ necessities.



Two new Board members were introduced during the Assembly: Eda Kedves from Hungary and Peter Fasung from Slovakia.

To keep on the good work EDbN requires all its affiliates to contribute in specific areas such as: Information and communication technologies, accessibility to transport, high support needs, to built an ideal working environment, work together with the UN Convention Rights of People with Disabilities, life long learning and employment, independent living and employment and to grant access to goods and services.

The final EDbN´s program point involved Deafblind Europa Review magazine. It is of major importance to write at least an editorial per year and to try to involve every country member into writing an article or more per number. 

EDbN members at the conference.  



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Deafblind International Lille´s Summit

The past 24th until the 28th of August, Deafblind International organized a conference at Lille, France, which served congenital deafblindness and acquired deafblindness, scientists and other participants to discuss several subjects, share experiences and participated in a variety of activities.

 Three were the main topics the board focus, all of them with equal significance to this worldwide association: Denial, Shame and Pride; Empowerment; Identity and Narratively. Expert researchers dealt each one of them on plenary sessions and answering questions from the attending audience.

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Deafblind Summer Camp at Cambrils

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EDbn took active part in the latest Deafblind Summer Camp for persons who have a significant hearing and vision loss, celebrated in Cambrils, Catalonia, and organized by Deafblind Spanish Federation (FESOCE).  The camp was held on the first days of September and the attendance enjoyed from several days of guided activities, while family members some well deserved relaxing time at the end of summer.

The EDbN team organized various events specially adapted to the particular needs of each user. Workshops and field trips were programmed to encourage each individual to develop a sense of confidence, independence and enriching the interactive experience.


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European Indicators for Deafblind Project Meeting

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The celebration of the European Deafblind Conference last 24th of August in Lille, France, was the ideal setting to present the European Indicators for Deafblind Project. With the attendance of 21 members of 7 different countries (France and Slovakia were not present), the second phase of this major task, developed under the guidance of APSOCECAT, was introduced to the public.

The first part of the plan, accomplished during the Copenhagen summit on May 2012, dealt with defining and writing down which should be the correct indicators for the assignment. Once that was achieved, a second one consisted in the development of a complete questionnaire dealing with all relevant aspects in the different categories.


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Deafblind awareness week logo

2013 Deafblind Awareness International Week

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August 4th 2013

Once again FESOCE celebrated the Deafblind Awarness International Week simultaneously with the Helen Keller Foundation Deafblind Awareness Week.

In June 1984 former United States of America President Ronald Reagan recognized Deafblind as a disability. Every year since that date and during the last week of the month of June, the Heller Keller Services for the Blind celebrates a series of activities in order to acquire some exposure and to socially conscience the general public over this disability.

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A meeting

EDbN General Assembly Meeting

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EDbN General Assembly 2013

Lille (FR), 24 August 2013   TIME: 17h


Room Hainaut
Congress Centre
Lille Grand Palais
1 Boulevard de Cités-Unies

In the upcoming Deafblind Conference to be celebrated in Lille, France; EDbN will organize its first General Assembly in more than 10 years to explain all our members the objectives we pursue, our working methods and to exchange opinions.


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Issue #01

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    In this issue: What is deafblindness? EDF Action plan Budapest Accesible Catalonia Recognition in Poland Making a difference in Europe Public consultation with a view to a European Accessibility Act EDbN Biannual working plan 2012-2014 World Confederation of Parents UK Landmark Supreme Court judgement clarifies social care law How many deafblind people are there? Deafblind Shape. Tactile

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8th European International Deafblind Conference


1st August 2013

The 8th Deafblind International European Conference will be held in Lille, France, from the 24th to the 28th of August 2013.

The Deafblind International Conference, entitled “Identities and changes – Commonalities across deafblindness – Learning from each other” will tackle the main challenges deafblind individuals, their families and the professionals who work with them, face along their life.

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Deaf, hard of hearing and deafblind people join the board of directors of the European Disability Forum (EDF)

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Ricard López, president of EDbN, among the new members

29th May 2013

The general yearly Meeting of the European Disability Forum (EDF) took place on the 25th and 26th May in Athens, with the participation of the member organizations representatives from whole Europe. EDbN was present there as member of EDF.

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Belgian deaf twins euthanasia case

Deafblindness and the loss of autonomy

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Ethical and care reflections concerning a recent case of euthanasia


The international press has been shaken by the recent news regarding a case of euthanasia applied to two brothers in Belgium. According to information available, the Verbessem twins, deaf since birth, were diagnosed with a degenerative ocular disease that would deprive them of their sight and would make them become Deafblind.

Since this is our area of expertise, EDbN cannot abstain itself from making a pertinent reflection that under no circumstances questions the decision of two adults of sound mind whose end fits into the terms established by the legislation of their country.

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European Platform of Deafness, Hard of Hearing and Deafblindness first conference

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One of the objectives of the conference is to highlight the lack of accessible and reliable data to key stakeholders who are in a position to change this situation.


The European Platform of Deafness, Hard of Hearing and Deafblindness announces its first conference, Mind The Data Gap! Lack of statistics for an effective EU inclusion strategy?! It will be held this Thursday 15 of November at the Representation of the free state of Bavaria, Brussels.

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Peggy Freeman

Peggy Freeman one of the great ‘trooper’ from the early days of Deafblindness passed away.

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Do you remember “The Deafblind Baby”? Peggy Freeman one of the great ‘trooper’ from the early days of Deafblindness passed away.

Peggy Freeman, MBE

1918 – 2012

Co-founder of Sense

 “Above all my thanks go to Bunty and all deafblind people. To serve them has given a purpose to my life.” 

 Peggy Freeman, MBE, sadly passed away in a Nottingham hospital over the weekend, following a short illness. Aged 94, Peggy was one of the parents who co-founded the National Deafblind and Rubella Association in 1955, the organisation which later became the charity Sense. 

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European Platform Logo

Mind the Data Gap! Brussels 15 november 2012. 1st. Joint Conference of the European Platform of Deafness, Hard of Hearing and Deafblindness.

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Mind the Data Gap!

Lack of statistics for an effective EU inclusion strategy?!

Save the Date – 15 November 2012, 14:00–17:30 CET

 The European Platform of Deafness, Hard of Hearing and Deafblindness is pleased to announce its first joint conference on the lack of detailed statistical data related to Deafness, Hard of Hearing, and Deafblindness.

 The event will take place at the prestigious Bavarian Representation, near  the  European Parliament in Brussels. Speakers include representatives from the European Institutions, as well as the European NGO community. A panel will discuss the need for high–quality statistical data and its link to the European Accessibility Act. The event will be followed by a networking reception.

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Listen to me 3 logo

2006 September. Salou, Catalonia (ES). European Family Event Conference LISTEN TO ME 3 “Parent Power”

The V European Family Conference took place in Salou (close Barcelona), Catalonia – Spain, in October 2006 since the 1st until the 6th. The previous family conference was hold in Slovakia, The Netherlands, Italy and Denmark. From Italy these events receive the name of “Listen to me” so the Salou event will be called “Listen

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Logo European Platform of Deafness, Hard of Hearing and Deafblindness

Constituted the EU Platform for deaf, hard of hearing and deafblind. Copenhagen, May 26th 2012

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 Press Note

Today, May 26th 2012, the “European Platform of Deafness, Hard of Hearing and Deafblindness” has been created in Copenhagen during the General Assembly of the European Disability Forum EDF.  

Marcel Bobeldijk, EFHOF President; Ricard Lopez, EDbN President, Yannis Vardakastanis, EDF President, Yannis Yallouros, EUD Vice President, Sari Paloposki, FEPEDA Vice President, Gilles Cognat, EURO-CIU PresidentThis Platform has been formed to enhance, strengthen, and cultivate a robust and enduring collaboration between the European Cochlear Implant Users (EURO-CIU), the European Deafblind Network (EDbN), the European Federation of Hard of Hearing People (EFHOH), the European Federation of Parents of Hearing Impaired Children (FEPEDA), and the European Union of the Deaf (EUD), for the express purpose of benefiting Deaf people (including sign Language users), Hard of Hearing people, deafened people, and Deafblind people and their families regardless of the language, the communication system or the assistive technologies they use (hearing aids and cochlear implants). We aim to strengthen the EU 2020 strategy and the EU Disability Strategy as regards to full and equal participation in society.


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2002 Listen to me 2. A personal experience: Letter of Peter Fasung of Slovakia.

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Family event “Listen to me 2” Slettestrand, Northern Jutland. DK. 2004. 20th – 26th June 2004. A personal experience: Letter of Peter Fasung of Slovakia. Wonderful family weekend in Slettestrand – Denmark 20.-27. june 2004 When we got the wind of the information that also in year 2004 we will participate on second family conference

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2004 June. Slettestrand, Northern Jutland (DK). Family event “Listen to me 2”.

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20th – 26th June 2004.   For the young guests activities as: exploring local nature, music, outdoor sculptures, artistic activities. Drama and dance for the deaf blind participants and brothers and sisters. For parents: 1.   discussion concerning the experiences and the future of European collaboration and the future of the new siblings group. 2.   Workshops

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2002 Listen to me. A personal experience: Letter of Arleta Kubicka of Poland.

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Family event “Listen to me” Ruvo di Puglia (BA, Italy) 20th – 27th October 2002.   A personal experience: Letter of Arleta Kubicka of Poland. My name is Arleta Kubicka. I am a mother of 7 years old daughter, Izabela, who is a deaf-blind child. I live in Poznan, in west of Poland. On 20-27

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A view of the visit to Alberobello.

2002 October. Ruvo di Puglia (BA, Italy). Family event “Listen to me”.

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20th – 27th October 2002. For the young guests activities as: “Beyond the words” artistic activities.   For parents: 1.   Life and choice by Frank Ullmer. 2.   Growing up together by Ursula Heinemann. 3.   Quality of life for family members, Patrizia Ceccarini. 4.   Presentation of Apascide, the spanish organization by Juan Carlos Ruvira 5.   Art

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There are at least 150,000 deafblind citizens livings in the European Union. The personal testimony which forms the basis of this report, reveals a group of people who count as amongst the most socially excluded citizens in Europe. They face unique disadvantages in a world that is organised for the hearing and sighted. In January

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2001 May. Vienna (Austria) seminar, Deafblind people, family members and professionals working together.

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Austria is a country with a special geography. The country is divided in several regions. Each region has its own laws and structure. That is the reason why awareness raising and initiatives involving deafblind children and adults are done on a regional or local level. This EDbN conference in Vienna on the 19th and 20th

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Partial view of the meeting room.


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Our EDbN seminar on the 20th of May 2000 in Ancona, Italy was on all aspects of equal opportunity for deafblind people. We have started a new area, where policy starts from the point of view of deafblind people themselves. There is the anti discrimination clause in article 13 in the Amsterdam Treaty and in different countries new laws are being prepared to seek equal opportunities for disabled people. Disability is not only a social issue, it became a human rights issue towards full citizenship. It was said that we need legislation that recognises deafblindness and legal rights to special services, stronger civil rights in employment, greater awareness of deafblindness and change of attitude towards deafblind people. Deafblind people themselves need to be involved in awareness raising. Sense UK gave the about 60 participants many examples how to do it. Deafblind people, family members and professionals have each a very importaht role in awareness raising campaigns.

It is almost one year ago since EDbN’s visit to Ancona, but I still remember the singing and playing music, the atmosphere of friendship and partnership.
Many thanks to the Lega del Filo D’Oro in Italy and to William Green, who did everything to make this seminar a success.

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1999 Kosice. Slovakia. Family event “3rd European Family Conference”

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    September 1999. The Third European Family Conference was held in Slovakia one sunny weekend in September 1999 in the beautiful city of Kosice. There were over fifty people from sixteen European countries, mainly parents and other family members and a few professionals, with a large group from Central and Eastern Europe. We came

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  18TH – 21TH OF SEPTEMBER 1997 There were approximately 80 persons from all over Europe. Also from Africa and Canada. The programme was quite full. We had lectures about the big variety of deafblindness. Video films were shown. There was a programme for deafblind youngsters about how to find a job. Some advice for

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1997 November. Dublin Seminar, Report back from the groups discussions: Deafblind people, professionals and parents.

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The Deafblind groupResearch should be done to develop communication with four hands, hands on signin, technical aids, international exchange in this field.In the future we should have separate programmes at the same time: One programme on congenitally deafblindness ant the other on acquired deafblindness, we can have a deeper conversation in that way. How can

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1 million signatures campaign

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EDbN is a member of EDF (the European Disability Forum) which is a European level organisation campaigning for the rights of all disabled people in the European Union.

EDF has just launched a campaign to collect 1 million signatures to combat discrimination in all aspects of the lives of disabled citizens in Europe. It is important for EDbN members to support this campaign as disability specific legislation at a European level would encourage national governments to bring in disability specific legislation in countries where there is none or it is inadequate at the moment.

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Europe recognises deafblindness as a distinct disability.

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Lucy Drescher reports on her work joining friends and colleagues across Europe that led to this ground-breaking decision!

A historic Written Declaration on the rights of deafblind people was formally adopted by the European Parliament on 1 st April, 2004. This was the culmination of a long campaign by deafblind people, families and professionals in Europe.
The Written Declaration is a 200 word statement about the fact that deafblindness is a distinct disability. It lists the rights to which deafblind people should be entitled.
EDbN (European Deafblind Network) has been working for some time with Richard Howitt MEP, Chair of the Disability Intergroup in the European Parliament, on a campaign to get deafblindness recognised as a separate disability at the European level. Sense, as a member of EDbN, has been leading on this campaign.

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London meeting. EDbN Reconstitution. March 2003.

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EDbN was originally set up to access funding from Europe for deafblindness projects. One of its principles was to involve a parent or family representative, deafblind person and professional from each country. Equal importance was attached to the three groups. At one point EDbN managed a coordination grant from the EU and funded a secretariat which was run for many years by Lex Grandia and Ann Thestrup. It had a newsletter, organized annual meetings, seminars, and had many projects. Unfortunately the EU then decided to fund fewer European NGOs in the disability field. Last year, as expected, the EU did not provide a grant for EDbN. EDbN held a meeting in Brussels last May (within a social inclusion project) at which a strong feeling was expressed that something should be kept going. In Athens, in September 2002, this was confirmed and the decision was taken that a number of organizations and people would work together as the EDbN.
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EDbN working groups

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The working groups are the EDbN way of taking advantage of the expertise of its members on concrete issues of common interest. Some of them are:

  1. Liason and Monitoring of issues of EDF.
  2. Structural funds of EU.
  3. Sharing projects at European level. 
  4. Accessibility.
  5. Statistical info. Counting People with Deafblindness.
  6. Good practices on Deafblindness.


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EDbN Staff

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Lucy Drescher:

  • Lead campaigning
  • Encouraging participation in campaigns
  • Disseminating information on campaigns

Ursula Heinemann (Network Co-ordinator):

  • Managing the administration of EdbN
  • Responding to enquiries
  • Encouraging participation
  • Disseminating information
  • Coordination and support for meetings

Ricard Lopez:

  • Chair
  • Website management
  • Managing the EDbN email group
  • Encouraging participation of families
  • Official representative of EDF
  • liaison with WFDB, EDBU, EBU and DbI


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EDbN Constitution

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1. Name, Legal Form and Registered Address

The association is called the European Deafblind Network (EDbN). It is a non-governmental, charitable and non-profit making organisation. The organisation must have at least one registered address in a European Union country.


2.1 Aims

The aim of EDbN is to improve the situation of deafblind people in Europe with the objective of achieving their equal rights and full participation in society, and to be a European forum for the exchange of knowledge and experience in the area of deafblindness.

2.2 Functions

a) To support and help deafblind people, their families and the people who work on their behalf.

b) To work for an improvement in the living conditions of deafblind people, and for their rehabilitation and integration in Europe.

c) To promote the exchange of information and experiences between organisations of and for deafblind people and other organisations.

d) To promote and carry out research and studies in all areas that affect deafblind people.

e) To collect and distribute information about the situation of deafblind people in Europe.

f) To provide technical and material support for national organisations of deafblind people, their families and professionals working on their behalf.

g) To support national organisations in Europe active in the field of deafblindness.

h) To implement necessary measures to achieve the aims of EDbN.

2.3 Relations with other organisations

EDbN establishes and maintains relations with the European Union (Parliament, Commission and Council), with the institutions of the United Nations, with international organisations in Europe and with the regional offices of the international organisations whose aims are in accordance with those of EDbN and its members.


3.1 Forms of Membership

There are the following forms of membership:

 a) Full membership

b) Associate membership

c) Honorary membership

3.2 Full Membership

3.2.1Full Membership of EDbN is open to associations and organisations

– of deafblind people

– of their families

– of professionals working for and on behalf of deafblind people and or their families.

3.2.2 Applications for Full Membership must be made to the Management Committee. In case of rejection the applicant can request a decision by the Council.

3.2.3 For each of the three groups only one association or organisation per country can hold Full Membership. The organisation is represented in EDbN by a person, who must be a member of the organisation, chosen by the other members.

3.2.4 If a member represents more than one group it is entitled to send the corresponding number of delegates. This is also the case if a member is active in more than one country.

3.3 Associate Membership

3.3.1 Associate Membership of EDbN is open to other organisations

3.3.2 Associate Membership is decided by the Management Committee and requires the agreement of the Council.

3.4 Honorary Membership

Honorary Members are chosen by the Management Committee in recognition of their  contribution to, and support of, the interests of deafblind people.


4.1 The governance of EDbN consists of the following bodies:

-the Council

-the Management Committee

4.2 Council

4.2.1 council is the supreme governing body of EDbN.

4.2.2 Meetings of Council are open and consist of delegates representing the Full Members. Each delegate has one vote. Providing that notification for Council Meetings is in accordance with this Constitution they are quorate regardless of the number of delegates present.

Associate and Honorary Members may participate in Council Meetings in a non-voting capacity. –

4.2.3 Council meets at least every two years. Additional meetings may be convened at the request of one third of the Full Members, at the request of the Management Committee or when a new Management Committee is to be elected.

4.2.4 Meetings of Council are announced in writing, with an agenda, by the Secretary at least 12 weeks in advance. The date of the postmark is taken as the date of dispatch.

4.2.5 Applications and motions to be considered by Council must be received by the Secretariat eight weeks before the meeting. They must be circulated to the members immediately.

4.2.6 Council has in particular the following responsibilities:

a) to determine policy

b) to discuss all recommendations presented by the Management Committee and make the necessary decisions

c) to receive reports from all the committees and give or withhold approval

d) to set budget parameters strategically

e) to receive the Treasurer’s report and give or withhold approval

f) to determine the membership fee

g) to elect the Chairman of EDbN. The Chairman chairs both Council and the Management Committee

h) to elect the Management Committee

i) to approve the Vice-Chairmen, Treasurer and Secretary, appointed by the Management Committee

j) to consider all proposals presented to it

k) to elect two members of Council to act as auditors who examine and report on the management of EDbN’s finances

l) to consider resolutions to amend the Constitution. For such a resolution to be carried a 75% majority of all votes cast is required. Resolutions to amend the Constitution must be circulated to all members at least four months before the Council Meeting at which they are to be discussed .

m) to make decisions concerning the dissolution of EDbN. For such a resolution to be carried a 75% majority of all votes cast is required. A resolution to amend the Constitution must be circulated to all members at least four months before the Council Meeting at which it is to be discussed

4.2.7 Only the delegates of Full Members are entitled to vote. Each delegate has one vote which is not transferable to another Full Member. Voting is through consensus or through the raising of hands, unless a delegate requests a secret ballot. In this case a secret ballot is held.

4.2.8 All voting, with the exception of amendments to the Constitution and the dissolution of EDbN, requires a simple majority of the votes cast.

4.2.9 Elections are carried out by secret ballot. If the number of candidates is equal to the number of positions to be filled they can be elected in one ballot. The candidates elected are those who receive the majority of votes in the first ballot. In the second ballot the vote is between the two candidates who received the most votes cast in the first ballot. If neither of them receives a majority of the votes then a third ballot is held and the candidate- who receives the most votes is elected.

4.3 The Management Committee

4.3.1 The Management Committee’s function is to undertake the business of EDbN.

4.3.2 The Management Committee consists of the Chairman, two Deputy Chairmen, six Committee members plus the Secretary and Treasurer. Each of the three groups from which Full Membership is drawn must be represented by three members on the Committee. The Chairman should be elected from these three groups in rotation

4.3.3 The Management Committee is elected for a period of four years. The term of office ends with the election of a new Committee.

4.3.4 The meetings of the Management Committee are announced in writing (with a full agenda including all items to be voted on) by the Secretary at least eight weeks in advance. The date of the postmark is taken as the date of dispatch.

4.3.5 The Management Committee has a quorum when at least six elected members are present and each of the three groups of Full Members are represented.

4.3.6 The Management Committee can appoint a Secretary and Treasurer to carry out its tasks. The Secretary and the Treasurer carry out their tasks under the supervision of the Management Committee.

4.3.7 If a Committee member retires between elections the Management Committee may appoint a replacement from the same Full Membership group as the retiring member.

4.3.8 Voting at Management Committee meetings is by a two-thirds majority.

4.3.9 If there is a calendar year with no Council Meeting the Management Committee is to draw up a written report for all members.


5.1 Financial year

The financial year shall be determined by Council.

5.2 Membership fees

The membership fees determined by Council are to be paid in the first month of the year. If the deadline for payments is missed the member concerned forfeits its entitlement to vote in Council or Management Committee meetings of EDbN. It can, however, apply to the Management Committee for a different settlement date.

5.3 Budget

5.3.1 The Council decides on a strategic budget to cover a period of four years. Each year the Management Committee is to provide a budget that is in accordance with the strategy and which is to be made available to the members in the first quarter of the financial year.

5.3.2 It is the role of the Management Committee to balance income and expenditure in the budget and ensure that expenditure does not exceed the available funds.

5.3.3 The auditors must be given access to all documents at any time. Their report must be circulated immediately to members.

Dublin, Ireland   Nov 11th 1997


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Smart Search

This module provides search using the Smart Search component. You should only use it if you have indexed your content and either have enabled the Smart Search content plugin or are keeping the index of your site updated manually. Help. {loadmodule finder,Smart Search}

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Quick Icons

 The Quick Icon plugin group is used to provide notification that updates to Joomla! or installed extensions are available and should be applied. These notifications display on your administrator control panel, which is the page you see when you first log in to your site administrator. Default on: Quick icon – Joomla! extensions updates notification

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The Captcha plugins are used to prevent spam submissions on your forms such as registration, contact and login. You basic installation of Joomla includes one Captcha plugin which leverages the ReCaptcha® service but you may install other plugins connecting to different Captcha systems. Default on: ReCaptcha help Note: ReCaptcha is a the trademark of Google

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Latest Users Module

This module displays the latest registered users. Help {loadmodule users_latest,Users Latest}

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Content plugins run when specific kinds of pages are loaded. They do things ranging from protecting email addresses from harvesters to creating page breaks. Default on: Email Cloaking Help Load Module Help Page Break Help Page Navigation Help Vote Help Default off: Code Highlighter (GeSHi) Help

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News Feeds

News Feeds (com_newsfeeds) provides a way to organize and present news feeds. News feeds are a way that you present information from another site on your site. For example, the website has numerous feeds that you can incorporate on your site. You an use menus to present a single feed, a list of feeds

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Wrapper Module

This module shows an iFrame window to specified location. Help {loadmodule wrapper,Wrapper}

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Who’s Online

The Who’s Online Module displays the number of Anonymous Users (e.g. Guests) and Registered Users (ones logged-in) that are currently accessing the Web site. Help {loadmodule whosonline,Who’s Online}

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Weblinks Module

This module displays the list of weblinks in a category. Help {loadmodule weblinks,Weblinks}

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Weblinks (com_weblinks) is a component that provides a structured way to organize external links and present them in a visually attractive, consistent and informative way. Help

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The users extension lets your site visitors register, login and logout, change their passwords and other information, and recover lost passwords. In the administrator it allows you to create, block and manage users and create user groups and access levels. Help Please note that some of the user views will not display if you are

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Default on: Joomla Help Default off: Two new plugins are available but are disabled by default. Contact Creator HelpCreates a new linked contact record for each new user created. Profile HelpThis example profile plugin allows you to insert additional fields into user registration and profile display. This is intended as an example of the types of extensions

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System plugins operate every time a page on your site loads. They control such things as your URLS, whether users can check a “remember me” box on the login module, and whether caching is enabled. New is the redirect plugin that together with the redirect component will assist you in managing changes in URLs. Default on:

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Syndicate Module

The syndicate module will display a link that allows users to take a feed from your site. It will only display on pages for which feeds are possible. That means it will not display on single article, contact or weblinks pages, such as this one. Help {loadposition syndicate,Syndicate}

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Statistics Module

This module shows information about your server installation together with statistics on the Web site users, number of Articles in your database and the number of Web links you provide. {loadmodule mod_stats,Statistics}

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Site Map

{loadposition sitemapload} By putting all of your content into nested categories you can give users and search engines access to everything using a menu.

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The search component uses plugins to control which parts of your Joomla! site are searched. You may choose to turn off some areas to improve performance or for other reasons. Many third party Joomla! extensions have search plugins that extend where search takes place. Default On: Content Help Contacts Help Weblinks Help News Feeds Help Categories Help

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Joomla! 2.5 offers two search options. The Basic Search component provides basic search functionality for the information contained in your core components. Many extensions can also be searched by the search component. Help The Smart Search component offers searching similar to that found in major search engines. Smart Search is disabled by default. If you

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Related Items Module

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This module displays other Articles that are related to the one currently being viewed. These relations are established by the Meta Keywords.  All the keywords of the current Article are searched against all the keywords of all other published articles. Help {loadmodule related_items,Articles Related Items}

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Random Image Module

This module displays a random image from your chosen image directory. Help {loadmodule random_image,Random Image}

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News Flash

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Displays a set number of articles from a category based on date or random selection. Help {loadmodule articles_news,News Flash}

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Most Read Content

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This module shows a list of the currently published Articles which have the highest number of page views. Help {loadmodule articles_popular,Articles Most Read}

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Menu Module

This module displays a menu on the site (frontend).  Menus can be displayed in a wide variety of ways by using the menu options and css menu styles. Help {loadmodule mod_menu,Menu Example}

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Login Module

This module displays a username and password login form. It also displays a link to retrieve a forgotten password. If user registration is enabled (in the Global Configuration settings), another link will be shown to enable self-registration for users. Help {loadmodule login,login}

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Latest Articles Module

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This module shows a list of the most recently published and current Articles. Some that are shown may have expired even though they are the most recent. Help {loadmodule articles_latest,Latest News}

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Language Switcher

The language switcher module allows you to take advantage of the language tags that are available when content, modules and menu links are created. This module displays a list of available Content Languages for switching between them. When switching languages, it redirects to the Home page, or associated menu item, defined for the chosen language. Thereafter,

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Footer Module

This module shows the Joomla! copyright information. Help {loadmodule footer,Footer}

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Feed Display

This module allows the displaying of a syndicated feed. Help {loadmodule feed,Feed Display}

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These plugins are the buttons found beneath your editor. They only run when an editor plugin runs. Default on: Editor Button: Image Help Editor Button: Readmore Help Editor Button: Page Break Help Editor Button: Article Help Default off: None

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Editors are used thoughout Joomla! where content is created. TinyMCE is the default choice in most locations although CodeMirror is used in the template manager. No Editor provides a text box for html content. Default on: CodeMirror Help TinyMCE Help No Editor Help Default off: None

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Banner Module

The banner module is used to display the banners that are managed by the banners component in the site administrator. Help. {loadmodule banners,Banners}

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