“Treasure Our Exceptions”

Findacure is a UK charity that builds the rare diseases community to drive research and develop treatments.

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. Select the links below ‘Our Work’ to find out more!


Our Work

Patient Group Empowerment

 

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:

Workshops

Webinars

Peer Mentoring

Online Portal

Collaborations and Drug Repurposing

 

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:

Drug Repurposing Social Impact Bond

Scientific Conference

Networking Events

Student Essay Competition



Watch our introductory video