Rare diseases are defined in the EU as conditions affecting less than 1 in 2000 people — though they come much rarer than this. Because of their small patient populations, rare diseases are often assumed to be unimportant. This leads to a lack of support for patients and families, neglect by the medical profession, and little ongoing research into treatments.
Findacure is here to help. We empower rare disease patient groups through a series of training programmes, and encourage collaboration between rare disease stakeholders to advance research. Scroll down to find out more!
Since 2012, we have helped over 120 patient support groups – representing over 350,000 patients – to grow and flourish. These patient groups are a vital lifeline to patients and their families, providing them with much needed support and advice. Our patient support group training includes:
We truly believe that collaboration between all rare disease stakeholders is necessary for the rare disease community to progress. This includes patients, patient groups, researchers, the pharmaceutical industry, clinicians, students, and more. Our collaborative and research work includes: