Help RareConnect break the isolation

Dear Víctor Norberto Cerasale   Sophia was diagnosed with Myrhe syndrome when she was only 4 years old. Her mother, Eileen, was told at the time that it was an extremely rare syndrome with only 32 cases in the world. Sophia was the first person to be diagnosed in the UK.

Watch Sophia tell her story Breaking the isolation is critical for people living with a rare disease.  This is why RareConnect launched the first Discussion Groups in September 2015.   There are still too many people affected by rare diseases, who have to cope alone, with no place to connect or talk about their concerns.     We need your help to launch more Discussion Groups on RareConnect!

BREAK THE ISOLATION Help us to connect people living with a rare disease through RareConnect Rob from EURORDIS