One of the aims of this Association is to create a national support network to help those newly diagnosed or perhaps others who are experiencing difficulties and need someone to lean on who understands about the difficulties faced with Jeune Syndrome.

Becoming a volunteer support person
A volunteer support person is someone who is willing to provide occasional online or phone support to other families affected by Jeune Syndrome who have contacted the Association. We encourage all members to be a volunteer support person.

How does it work?
When someone contacts the association requiring some support, we then search our database for the most appropriate person based on location and type of support needed and ask the member if they could help. Where possible, we will try to select a volunteer who is located closest (or at least in the same state) as the person requesting the support. If the member can assist, the caller’s email or phone number will be forwarded to the member so that they can make contact direct.

To become a member, please complete the membership form and send it to the address listed under “Contact Us”.