Completed
Launch webinar: New publication on CHARGE syndrome
Disability issues
Individuals with CHARGE syndrome can lead fulfilling lives if they get appropriate support, focusing on more than just medical challenges. In this webinar we launch our new publication Re-CHARGE – Voices about living with CHARGE syndrome. This publication shows, through case studies and interviews, some daily lives, challenges, and achievement of those living with CHARGE syndrome.
Living with CHARGE syndrome can entail different aspects and challenges. Often, the focus revolves around the medical aspects, and less on how individuals can function in their day-to-day lives. Persons with this syndrome represent a small group which means that when professionals encounter someone from this population they may have limited knowledge about the syndrome. And even though there is lots of knowledge regarding the medical aspects of CHARGE syndrome, there is a lack of case descriptions and interviews, telling the story from the perspective of the persons living with the syndrome themselves.
In this webinar the Nordic network on CHARGE syndrome will present their new publication and talk about the reason they felt there was a lack of voices from the CHARGE community.
The aim of this publication will show the diversity and give a voice to a group that seldom is heard. Hopefully, parents, legal guardians, and relatives can get a more positive picture of what life with CHARGE syndrome might look like.
Program:
12.00 – 12.15 Introduction to the publication by the Nordic network on CHARGE syndrome
12.15 – 12.40 Questions and answers
Share
