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
Sense of connection and belonging to a community;
Creating a central space to share experiences and information;
Being understood by others who ‘get it’;
Offering each other support and strategies for wellbeing;
Sense of reward from helping others;
Feeling more in control over your situation;
Meeting new people, feeling less isolated and alone;
Feeling better equipped to support friends or family with the condition.
Setting up a support group
Important considerations for setting up your new support group:
How will you communicate with your group? (Most groups start as Facebook groups.)
Who is the group for? Are support people such as partners and children able to attend?
If the main facilitator is not available who will cover? (Having two or more facilitators is helpful.)
How could you get new members to join your group? (Talk to Rare Disorders NZ to make sure your group is listed on the Rare Disorder NZ database and searchable on our website.)
Will it be a closed Facebook group?
Who can post to your group?
How often will you share information? (Remember to share information from the Rare Disorders NZ Support Group Lead monthly newsletter with your group where relevant.)
Think about what the rules of your group will be. (Rare Disorders NZ can help with this.)
Have you checked whether there is somebody already doing this? Could you connect with them and perhaps develop or add to its work?
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, some information is below. For more information please contact Rare Disorders NZ for support.