twitter facebook email
"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK


You are here: Home / Living with a Rare Disease / Stories from Patients and Families

Stories from Rare Disease Patients and Families

In this section you can find out more about what it is like to live with, or care for someone with, a rare disease. The stories featured are real experiences and will give you an insight into some of the issues these patients face on a daily basis.

Please follow the links below for more information: