Findacure is a UK charity that works with advocates to find treatments for the world's rarest diseases.
Our vision is a world in which all rare diseases have treatments - made together with patients, for patients.
To achieve this vision, we provide training to rare disease patients, parents and advocates to help them establish, grow and professionalise patient groups and charities for their conditions. With the right knowledge, confidence and contacts, these patient groups can reach out to isolated patients, provide them with the support they need, and drive research forward. Without patient groups, rare patients have no one to turn to for credible advice on disease outcomes and possible treatments, and researchers have no organisation that they can approach and work with.
Our patient group training programmes include:
- Workshops - in-person training event on a specific topic. Past workshops have focused on building patient registries, navigating NICE's Highly Specialised Technologies Programme, and fundraising from the community.
- Webinars - shorter online broadcasts, each on a specific topic. Past webinars have focused on raising awareness among health professionals, developing a website on a tight budget, and developing medical guidelines.
- Peer mentoring - annual programme that matches patient advocates or groups to a mentor based on their needs
- Online portal - central resources hub that ties all of the above projects together. Includes text and multimedia topic-specific guides.
We also bring together all stakeholders, including patient groups, researchers, clinicians and pharma, to build a rare community:
- Conference - our annual rare disease day conference always attracts a diverse audience to learn about latest progress in rare disease research
- Showcases - held around the country, our Showcase events share rare disease work in a specific location
- Essay competition - open to all undergraduate and masters students, our Student Voice essay competition gives medical students the chance to explore rare diseases in their studies, our essay competition
For more information, please visit our website.