Contact Corner

"Contact other people affected by a genetic condition"

AGSA will post requests for contact and letters from people searching for families with similar experiences, from those seeking or contributing specific information as well as other resource information.

Anyone who wishes to reply to a request should write directly to the individual or group concerned where an address is provided. The AGSA office may be contacted for the information to be passed on in the case of anonymous requests. Privacy and anonymity will be ensured if requested.

While AGSA aims to facilitate contacts between families it is unable to assess the suitability of these in individual cases.

It should be remembered that a shared genetic condition does not necessarily mean an equally shared value system between families. Different degrees of acceptance and different mechanisms for coping will be encountered and a non-judgemental approach is recommended in establishing contact.

If you would like to post a notice on Contact Corner, please ring 02 9211 1462 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

*** Latest Contact Request - Brown Vialetto Van Laere Syndrome / Fazio Londe ***

Checking to see if any of you have contact with any families with this very rare condition. The enquiry is from a NZ family currently in the UK who have this diagnosis and will be returning to NZ soon. They’d like to make contact with other families in this part of the world, if there are any.