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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...

 Patient Groups /  UK / 656 views / Popular

Ataxia UK is the leading charity in the UK that supports people affected by any...

 Patient Groups /  UK / 606 views / Popular

Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...

 Patient Groups /  UK / 828 views / Popular

Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We...

 Patient Groups /  UK / 546 views / Popular

Birt-Hogg-Dubé syndrome is an inherited condition, characterised by the development of fibrofolliculomas (benign skin tumours),...

 Patient Groups /  UK / 701 views / Popular

CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...

 Patient Groups /  UK / 503 views / Popular

Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...

 Patient Groups /  UK / 797 views / Popular

Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...

 Patient Groups /  UK / 495 views

Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed...

 Patient Groups /  UK / 676 views / Popular

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...

 Patient Groups /  UK / 658 views / Popular

The Fragile X Society aims to improve the lives of those affected by Fragile X...

 Patient Groups /  UK / 634 views / Popular

A brief description of Fragile X Syndrome: how it is caused, its effects, diagnostic tests,...

 Learning Resources /  UK / 543 views / Popular

Designed to provide easily accessible and up to date information for anyone affected by genetic,...

 Patient Groups / 1469 views / Popular

Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...

 Patient Groups /  UK / 830 views / Popular

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