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"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

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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: