Receiving a rare diagnosis can be incredibly confusing and scary. Findacure is often contacted by patients desperately searching for more information and a community group to support them. While we actively refer people to the patient groups we work with, we don’t have a public directory of patient organisations; therefore, in today’s blog, we wanted to share some simple ways (other than a Google search) to find the groups that will help you. If you have any extra ideas, please do let us know!
Most patient groups have some sort of presence on social media – you just have to know how to find it! The easiest method is performing a filtered search across popular social media platforms. For instance, on Facebook you can type the name of your rare disease into the main search bar and then click ‘Pages’ and ‘Groups’ across the top to filter the search. Similarly on Twitter you can search the name of your rare disease and click ‘People’ to find organisations and individuals interested in that area.
EURORDIS – the European rare disease umbrella organisation – has its own online space for communication between patients, families and patient groups called RareConnect. The platform is divided into over 200 disease specific communities, which are further divided into topic-specific discussions. It’s free to sign up, and if there isn’t already a community for your rare disease, why not contact EURORDIS to discuss how you could set one up?
Orphanet is a huge database of rare diseases, orphan drugs, patient organisations, professionals and institutions, expert centres, ongoing research projects, and much more. To find a patient support group, go to their homepage and click ‘Directory of Patient Organisations’. Here you can enter a disease name into the search bar and choose whether you want to search all countries or a specific country. Click ‘Search’ and check out the results.
Genetic Alliance UK membership list
Genetic Alliance UK has a 200-strong membership of organisations which support patients and families affected by genetic disorders. Their membership list is hosted on their website with a handy search function. Enter a keyword, such as your rare disease name, into their search bar and see what comes up!
Genetic Disorders UK membership list
Genetic Disorders UK also hosts their ‘Partnership Network’ membership list on their website. Have a scroll through and see if any of the organisations relate to what you’re looking for.
Raremark publishes easy-to-understand information on the latest research and treatments in development in a small number of disease-specific online communities. Head to their homepage and enter your disease name into the ‘Find your community’ search bar to see if there is a community available.