Childs for the recognition of deafblindness throughout Europe

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.

This strong wish for continuing EDbN was strongly expressed again at the family conference last October in Puglia, Italy, where many families came together and explained their need for a platform.

So in March 2003 the following group came together to discuss the possibility of keeping EDbN alive: Richard Hawkes (Sense International), Wolfgang Angermann (German Deafblind Consortium, Acting Chairman of EdbN), Ricard Lopez (Catalonia & Spanish Parents Association), William Green (Vice- President Dbl, Consultant at Lega Del Filo d’Oro, Italy), Ursula Heinemann (Austria, sibling of a deafblind brother, psychologist,), Sue Brown (Head of Campaigns at Sense), Lucy Drescher (Campaigns Officer, Sense), Malcolm Matthews (Director of CSI at Sense, UK professional representative on EdbN).

We discussed exactly what EDbN should do in the future and it was recognised that this would really depend on the opportunities that arose and the commitment that different organizations/individuals may be able to give. It was emphasized that one of the strongest assets of EDbN is that it is an organization that brings together families, professionals and deafblind people. It was also recognized that both professionals and deafblind people have many other opportunities for coming together and so a key priority for EDbN must be to focus on families. Families need a strong EDbN as a driving force for networking and activities. However, it was reiterated that families would not be the only focus of EDbN. It would continue to look for opportunities for all three groups, whilst recognizing that families should be the priority focus whenever possible.

There remains value in an organization that involves professionals, families and deafblind people at a European level, i.e. EDbN, but in the future the key will be to work with and provide opportunities for networking for parents. Because of the impact of Europe within our own countries, we have also recognized the importance of campaigning at a European level.

The purpose of the meeting was to agree how Secretariat functions will be undertaken, to discuss campaigning, to agree priority areas, to look at communications (including the web and newsletter), and to agree membership of EDF. We also considered the link with Dbi including whether EDbN would like a place on DbI Council (EdbN is a network of DbI). It was agreed that Ursula would be EDbN’s contact with DbI and Ricard will be nominated for a place on DbI Council. Ursula offered to work as a volunteer for a number of hours each week and Ricard suggested areas he would like to be involved too. Sense has offered to work on campaigning. The main focus of the campaigning work will be ‘The recognition of deafblindness throughout Europe.

William and the Lega del Filo D’Oro and Richard and Sense International have committed themselves to being involved in trans-national activities and looking for funding.

Wolfgang has maintained the link with EDF and is willing to continue in this role. The meeting allocated tasks as follows:


  • Campaigning
  • Actively seeking funds (with Richard Hawkes & William Green)
  • Encouraging participation in campaigns
  • Disseminating information on campaigns

Ursula Heinemann (Network Co- ordinator):

  • Managing administration for EdbN
  • Responding to enquiries on a range of subjects related to deafblindness
  • Encouraging participation
  • Disseminating information
  • Maintenance of files.
  • Responding to queries from members and outside organizations
  • Coordination and support for meetings


Ricard Lopez:

  • Website management
  • Encouraging participation of families
  • Dissemination of information in electronic formats
  • Production of an EDbN clipboard and/or newsletter for dissemination throughout Europe
  • Liaison with Dbl (EdbN is a Council member of Deafblind International)

Wolfgang Angermann:

  • liaison with EDF
  • liaison with WFD
  • Official Representative EdbN


  • Contributing to decisions about location of conferences
  • liaison with any conference- organising committees
  • Campaigning will be led by Sense and will concentrate on explicit recognition of deafblindess in Europe.

It was noted that seminars and study days have been a part of EDbN activity in the past and similar events might be organized at some point in the future. The Denmark Family Conference in 2004 might be an opportunity for the next EDbN meeting. So this is the news for the moment from EDbN. We are not a group with financial security, but we want to keep our network alive with our dedication and motivation.

For information please contact: Ursula Heinemann