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International Groups & Organizations

support iconSense – this UK-based group is the leading national charity that supports and campaigns for children and adults who are deafblind.

Association CHARGE – this is a French support group, formed in 1996 by parents.

CHARGE Syndrome Association of Australasia Ltd – The CHARGE Syndrome Association of Australasia is a not-for-profit organisation committed to improving the health and welfare of children and adults with CHARGE Syndrome. The Association supports families in Australia and New Zealand to enable children and adults with CHARGE Syndrome to reach their full potential.

Netherlands Network for Rare Genetic Syndromes ‘Zeldsamen’

Groningen University Medical Centre (Netherlands) – Regarding medical issues the Groningen University Medical Centre is the place to be.

Kentalis (Netherlands)  Regarding all other issues like communication, development, behavior and well being Kentalis has a multi disciplinary ‘CHARGE team’. Kentalis offers care (residential and ambulant), education, rehabilitation and support for people with CHARGE and their families. They organize an annual meeting day for families. 

CHARGE Syndrome German – this is a non-profit self-help group in support of individuals with CHARGE and their families in German speaking countries (Germany, Austria, Switzerland, etc.).

The CHARGE Family Support Group UK – this is a UK family support group that has been in existence since 1987.

Asociación Española Síndrome de Charge – Family support group based in Spain

Canadian Deafblind Association

Mondo Charge –  Italian CHARGE syndrome association

If you would like your group listed here, email info@chargesyndrome.org.