People living with rare disease often face a diagnostic odyssey, typically waiting years for a...
Journals and Articles / 1538 views / Popular
Addison’s Disease is a rare endocrine condition where the adrenal glands cease to function, so that your...
Patient Groups / UK / 915 views / Popular
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 819 views / Popular
Alex TLC is a trusted and experienced organisation offering support and information for all those...
Patient Groups / London / 800 views / Popular
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 970 views / Popular
ArchAngel MLD Trust was established to support medical teams around the world who are working...
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Ataxia UK is the leading charity in the UK that supports people affected by any...
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Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
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Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We...
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Birt-Hogg-Dubé syndrome is an inherited condition, characterised by the development of fibrofolliculomas (benign skin tumours),...
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CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
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Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...
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Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
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Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed...
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Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and...
Patient Groups / UK / 826 views / Popular
The DFSG is a UK national charity, run by families for families affected by Duchenne...
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The Fragile X Society aims to improve the lives of those affected by Fragile X...
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A brief description of Fragile X Syndrome: how it is caused, its effects, diagnostic tests,...
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Designed to provide easily accessible and up to date information for anyone affected by genetic,...
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Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...
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