Research Portal Grid

Finding support for rare disease

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 »

Learn more about research

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 »

Joining rare disease research

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 »

Rare disease research today

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 »