Many people that visit RareConnect are interested in starting a formal rare disease patient organization to advocate for their disease and meet other people. We fully support that idea and wanted to offer a place for discussion about that topic.
The first question is really, “Do I need to set up a new, registered, patient organization within the laws of my country?” If a patient group already exists for that disease, please try to contact them and work together on projects that you think could be beneficial to people living with the rare disease. To search a list of patient groups in Europe, check EURORDIS’ website or write us and we will do a search: firstname.lastname@example.org
The next question is, “How can I find others to work with me on starting a patient group?” You can find other motivated partners through online communities like RareConnect. Try and establish a working group of interested people and discuss the first steps on a group Skype call. Don’t try to do it all alone. Ask family and friends to take on roles in the association or help with activities crucial to the non profit patient association being started. Check the Findacure website for more resources on starting a group. Contact a rare disease National Alliance in your country and ask for help.
What are the next steps to get a rare disease patient group started?
If you have recently started a patient group, where and how did you do it?
Share your experience on the RareConnect General Discussion Community.
Help others to walk the path you’ve already travelled.