What is a support group?
A rare disorder support group is a gathering of interested people who come together on a regular basis to provide a support network. This allows people dealing with similar challenges to share information, knowledge and support.
Support groups can be based in a specific city or town and focus on a defined rare disease. There may be options to group together similar disorders that have overlapping features. A support group may be unable to meet easily but can still connect regularly using technology.
Benefits of a rare disorders support group
- Sense of connection/fulfilling the need for belonging to a community
- Being understood by others who ‘Get It’ as they have been there; sharing experiences of real life situations
- Offering each other support and strategies for wellbeing; creating a central place to gather and share information
- Sense of reward from helping others
- Increased feeling of control over your situation
- Meet new people, feel less isolated and alone
- Feel better equipped to support friends or family with the condition
Setting up a support group
Visit our page on guidance on setting up a rare disorder support group.
Find a support group
NZORD has collected the contact details of rare disease support groups in New Zealand (and international groups where there is no New Zealand group), as well as other New Zealand health and disability support and information groups and services for both rare and common disorders that can provide information and assistance with conditions related to a rare disorder.
If you represent a support group that is not included in our directory, please let us know about your group: firstname.lastname@example.org or 04 385 1119.