It is often difficult to get the information and support you need. We have found the best support, and often a great source of information, is others supporting a VCFS individual. There are also books, websites, tapes etc., and these are referred to in our page titled Links and Resources.

The group meetings are also a good place to share information, experiences and listen to guest speakers from the professional arena. Currently the group meets formally in Auckland 3 – 4 times a year. Those of us who live locally to each other, meet more frequently on an informal basis. As new families are diagnosed around the country our hope is to see support meetings happening in other towns.

The meetings also provide an environment where families of newly diagnosed individuals can come to meet other families who are further down the track, to provide a view of the future, i.e. it isn’t bleak, it can be very positive and normal!

International conferences are held on a regular basis, which have been attended by some families. These are open to all VCFS families and medical professionals involved in or interested in VCFS.

The next international conference is in Brisbane in November 2006. There are a number of families from New Zealand planning to attend. We will source the tapes from the conference and these will be available for families to borrow.

If you wish to attend the conference please follow this link www.vcfs.com.au.