7,000 rare diseases have been identified but only 400 have a licensed treatment. We are uniting patients and families across all rare diseases to fight for change together. Will you join us?
Imagine being diagnosed with a disease so rare that there is no known cause, no treatment, no information online, and no support group to turn to. Imagine feeling that no-one, not even your doctors or friends, understand you. This is the situation facing millions of people around the world today. Because while rare diseases are individually rare, having a rare disease is actually common, and experiences of isolation, desperation and loss are far too frequent.
Findacure is a charity that is bringing the rare disease community together. We know that when you combine everybody’s expertise and passion, the rare community becomes an unstoppable force. We encourage patients and parents to grow their own patient communities and to share their experiences with others hoping to do the same. By saving them from reinventing the wheel, we are transforming the lives of rare disease patients together, and we will not stop until they all have the support and treatments they deserve.
What are rare diseases?
Rare diseases are defined as conditions that affect less than 1 in 2,000 people, but they are often much rarer than that. Find out more about the issues that come with rarity in our video or rare diseases page.
Who do we help?
Strong patient groups are crucial when it comes to rare diseases. Patient groups are organisations set up to support patients and families in all issues related to a specific condition. They connect with and support isolated patients, and are a driving force when it comes to research and campaigning for patients’ rights in healthcare, education, and employment. Most rare disease patient groups are led by a patient, family member or carer whose lives have been turned upside down by a rare diagnosis. While they have the passion and motivation needed, they often lack the experience, knowledge and confidence to fulfil their ambitions. We work with these individuals to improve their skills, confidence, and connections, meaning they can make a bigger difference to patients’ lives.
What do we do?
Findacure is building a unified and powerful rare disease community. By providing free training to rare disease patient groups, we are helping them to grow and professionalise. Our events bring the whole community together, letting patient groups speak face-to-face with clinicians and pharmaceutical professionals. We also promote drug repurposing as a sustainable model for academic and patient group led clinical trials for rare disease. Our work is made more widely accessible through our e-learning portal. Click the links below to find out more.