The aim of this group is to provide information, advice and support to families/carers affected by VCFS and to provide a contact register enabling families of children with similar symptoms/ages and/or locations to contact each other. Your own details can be added if you are happy for other families to contact you. Please contact us via email at the email address below.

The New Zealand VCFS Support Group objectives are:

• Support individuals/families/carers affected by VCFS.
• Raise awareness of VCFS, with professionals and support personnel.
• Distribute information to individuals with VCFS and their families/carers.
• Hold regular meetings to share experiences, discuss how to get the best out of the system (health, education and life after education), to see how those ahead of you are coping and what the future may hold for your family member. Where applicable, we have guest speakers from different medical/educational arenas share practical knowledge with the group.
• Provide new information to families/carers as we learn more.

The support group was formed approximately 6 years ago (around 2000) in Auckland, and is growing as further diagnoses are made all around New Zealand. A number of the early members have children who were diagnosed pre-teen whereas newer members have received earlier diagnosis as more of the medical profession come to recognise the symptoms of the Syndrome. In time, we hope there will be support group meetings in other towns too.

The group meetings have a good cross section of families with VCFS individuals ranging from babies to late teens. We even have one Mum who found out after her first child was diagnosed, she too has VCFS. So we have quite a wide range of experiences to share with new members/families who are reaching a stage where they would like to understand more to support their VCFS member/s.

If you are interested in joining the group or would like more information, please email us at vcfs.info@nzord.org.nz.