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About Us
As there is no automatic system of notification from hospital organisations to us when a child is diagnosed with this condition, we rely on families to make the initial contact with us when they are ready.
Follow this link to read about the history of the support group.
Support Group Aims
Our support group aims to provide information and support to families of children with Vein of Galen Malformation and to promote awareness of this condition in both public and medical communities.
We hope to achieve this aim by:
- Providing a web site with current information and research about the condition that families and medical professionals can refer to.
- Promoting positive connections between families enabling them to communicate and to support each other going through the process of surviving to thriving.
- Sharing of information on the condition and on raising a child with the condition that all members can contribute to.
- Organising get-togethers and activities where possible.
- Publishing an e-newsletter half yearly to members of the support group.
- Communicating with members through group e-mails, mail and phone calls if and when members need information and support.
Support Group Activities
Due to the rarity of this condition and the distance between families of those affected throughout New Zealand and Australia, regular whole group get-togethers and activities will be limited. In areas where there is more than one family we will encourage these families to arrange get-togethers and activities.
Joining the Support Group
If you would like to join the support group and receive e-mails and the e-newsletter, please fill out our online membership form or e-mail us at vgm.info@nzord.org.nz.
We look forward to hearing from you.
Bridgette Wright
Julie Kingi
Amee Watson