"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

Latest Partners

Motor Neurone Disease Association

dsd families

UK Potsies

The Neuromuscular Centre

Children's Liver Disease Foundation

Pemphigus Vulgaris Network

PSC Support

Birdshot Chorioretinopathy Uveitis Society

The Arran Brown Rainbow Foundation

Purine Metabolic Patients' Association

Ataxia South Wales

George Pantziarka TP53 Trust

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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: