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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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Living with Lowes

HLRCC Family Alliance

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Cystinosis Foundation UK

MLD Foundation

CDKL5 UK

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Bone Cancer Research Trust

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Living with a Rare Disease

RDUK works to raise awareness of rare diseases and the impact that they have on those affected by them. This section of the website provides an insight into the experiences of people living with rare diseases and details on our survey of patients and families carried out over summer 2010.

Please follow the links below for more information on living with a rare disease: