There is support available for patients living with a rare disease, or for family members affected by a rare condition. We have listed a number of sites where you may find useful information and organisations who are able to provide advice and support for your specific condition or needs: Genetic Alliance UK is a membership organisation… Read more »
Short videos about the role and importance of rare disease research have been made with some of our partners, including patients and carers, researchers and health professionals. Please do take a look at why they think it is important for patients and the public to be involved in research: Hear from member of the public,… Read more »
What type of research could I take part in? There are many different types of research that patients can help with, from projects aiming to look for common causes of a condition between patients through to more advanced research where a new treatment identified in earlier research projects is being tested to confirm a benefit… Read more »
Why is rare disease research important now? It is estimated that in around 80% of rare diseases, changes to an individual’s DNA are a likely cause of the condition. Recent advances in technology and understanding to find and analyse these differences, mean that more rare diseases than ever are being researched. As a result, patients,… Read more »
