SFN Research & Surveys (The Evidence Hub)
This page houses our critical data-gathering tools. This is essential for us to argue for better care with the NHS, privately and with policymakers: we need hard UK statistics.
We also need to create a SFN Registry for this and (if you want) to keep in touch with our community, so they know about any relevant updates.
Our current surveys at the moment:
SFN Patient Registry: A secure form tracking how many people in the UK actually have SFN to prove the true scale of the illness.
SFN Patient Experience Survey: Documenting diagnostic delays, how long patients wait for appointments, and how often they are dismissed by doctors.
The Treatment Success Tracker: Your unique survey where patients who have successfully accessed treatments (like Rituximab, IVIG, specialized nerve blocks, or specific medications) log exactly what worked and which UK clinics helped them, so others can copy their pathways. We have to make our own pathways if these wont be made for us.
(In Contstruction)
