Launch webinar: New publication on CHARGE syndrome

Our publication Re-CHARGE – Voices about living with CHARGE syndrome, presents a series of case studies and interviews. In this video two of the members from the Nordic Network on CHARGE syndrome present the publication.

One of the featured stories in the publication is that of Karl. “He was rushed to intensive care right after birth”, his mother recalls. Now he has taken significant steps towards independence, including learning to drive.

The Nordic network on CHARGE syndrome has spent the last few years collecting case studies from everyday practice and interviewing people with CHARGE syndrome and their families. Now the stories are gathered in our new publication Re-CHARGE – Voices about living with CHARGE syndrome. This publication aims to provide a comprehensive overview of the daily experiences, challenges, and achievements of persons living with CHARGE syndrome.

CHARGE is a rare syndrome that can be caused by a congenital genetic mutation. The symptoms affect several of the body’s organs and often involve hearing loss, visual impairment, and balance difficulties, and require a great need for medical treatment and special educational efforts. We still have little knowledge about the syndrome, which was first identified in 1981.

In this video two of the members from the Nordic Network on CHARGE syndrome give a presentation of the publication.

You can read or download the publication at:

00:05 Intro. Gøran AGC Forsgren, Nordic Welfare Centre
01:13 Presentation. Frida Racksäter Nerback, Mo Gård, Sweden & Ulrica Ravinale, SPSM, Sweden
08:54 Outro. Gøran AGC Forsgren, Nordic Welfare Centre

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