We want to support our members and those thinking about setting up new FSHD patient organisations by sharing all that we’ve learnt. We understand how daunting setting up your own patient led organisation can be. There is so much to think about, from governance to building your own community.
FSHD Europe is offering the ‘Guide to starting up a FSHD patient organisation’ and ‘Guide to create and manage a website’, to help and support you. We’d like to thank the Axial Spondyloarthritis International Federation (ASIF) and the International Mito Patients (IMP) for generously sharing with us the templates of their excellent ‘How To’ guides.
We understand that every country has different contexts and challenges. And we might not always have the answers. But we are committed to supporting our European FSHD community and will do all we can to help you.
We believe in your capacity to do this. And you will likely hit obstacles and frustrations. Please reach out to us at info@fshd-europe.info
Documents & Contacts
