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A rare disorder support group is a gathering of interested people who come together to provide a support network.
This allows people dealing with similar challenges to share information, knowledge and support.
Benefits of a rare disorders support group
Setting up a support group
Important considerations for setting up your new support group:
Setting up and running a support group takes time and effort so if you can partner with an established organisation this may make things simpler. Check with RDNZ’s directory of current rare disorder groups in NZ to see if there are other groups operating.
If you would like to take your support group to the next level and register as a charity, you may find the below links useful.
For more information please contact Rare Disorders NZ for support.