3.5 million people in the UK live with a rare disease, yet most face isolation and some may never meet another person facing the same challenges. Patient groups can be a good source of support, but only 50% rare diseases have a national organisation to which patients can turn, and those that do exist are tend to be set up by patients themselves rather than medical professionals. Simultaneously, patients and their families have little hope for a treatment: of the 7,000 recognised rare diseases, only 200 have licensed treatments, and depressingly, rare diseases are responsible for 35% of all deaths in the first year of life.

Findacure, a rare diseases charity, provide expert training and advice to help individuals start and grow their own patient groups. In 2015 alone they worked with over 100 patient group leaders, who are now better equipped to support hundreds-of-thousands of patients across the UK and Europe. Some of these groups have now started their own treatment research and clinical trials!

I am running the Silverstone Half Marathon and hoping to raise £200, which will go straight to Findacure. Any amount, no matter how big or small, will help me achieve my goal. Thank you!

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.