At times you may wish to hide away while you come to terms with your new reality. That is understandable, but also appreciate that there are others who have been through that experience. Many people feel great benefit from sharing with and learning from other affected patients or families, and many wish they had made contact sooner.

A significant change has occurred in New Zealand health and disability practice since the Privacy Act was passed. Previous generations may have had direct contact and offer of support from various support groups. The changes mean that you may be informed about a support group relevant to your condition, but the group will not be informed about you. This may tend to isolate you from possible support. Many people choose to make contact in their own good time, but many later regret waiting so long before connecting with other patients or families.

When you are ready to make contact, we recommend two possible approaches. Parent to Parent provide an excellent service in connecting up parents of children with rare disorders, to other parents with the same condition in their family. This is a one to one contact for confidential personal discussion. The support groups listed on our site can also introduce you to a wider network of families affected by the same or similar condition, for group support.