The CHARGE Association, the CRESAM, the NECKER’s Hospital medical experts, the CESSA and the ANPSA propose this to families and information and exchange conference professionals, in order to help all those who surround the CHARGE children to better meet their needs.
These conferences are aimed at improving the daily lives of children and young adults with the syndrome, as well as medical and educational approaches by making information accessible to all potential stakeholders.
The conferences
The next CHARGE syndrome focused conferences will take place on 20, 21 and 22 September 2018 at CREPS of Poitiers. Children with CHARGE syndrome will be welcome: they will be able to enjoy a welcome and activities with facilitators during the conference times.
The expected audience
These conferences are aimed at health and social professionals who work in the field of rare disability and more particularly with people with CHARGE syndrome.
They also concern families, caregivers, accompanying persons with this syndrome.
These days will be accessible to people with double sensory disabilities because they will be interpreted in Sign Language and the interventions will be live transcribed through the vélotypie.
Goals
These conferences are intended to make known the latest developments in medical research, hospitality and medico-social support for children and young adults. Leading specialists in this rare disease and disability have been invited to contribute.
The preparation of these conferences and the development of the program are the result of close collaboration between the Parents Association, CRESAM, the medical team of Necker Hospital, CESSA and ANPSA. This project aims to improve the daily lives of children and young adults with the syndrome, as well as medical and educational approaches by making information accessible to all potential stakeholders.
The acts
At the end of this congress, acts will be carried out, as in previous editions, a publication in digital and paper version is planned. Specific accessibility formats (large print, Braille …) may also be requested. This publication will be free.