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Posted 2 days ago

NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...

 Patient Groups /  UK / 3 views / New

Posted 2 days ago

The MPS Society provides support to families affected by one of 25 rare, life limiting...

 Patient Groups /  UK / 4 views / New

Posted 1 month ago

Huntington's Disease Association exists to help people living with Huntington's disease to live a better...

 Patient Groups /  UK / 53 views

Posted 1 month ago

The DFSG is a UK national charity, run by families for families affected by Duchenne...

 Patient Groups /  UK / 51 views

Posted 1 month ago

ArchAngel MLD Trust was established to support medical teams around the world who are working...

 Patient Groups /  UK / 46 views

Posted 2 months ago

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

 Patient Groups /  UK / 66 views

Posted 2 months ago

The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...

 Patient Groups /  UK / 113 views

Posted 2 months ago

SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...

 Patient Groups /  UK / 61 views

Posted 2 months ago

ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...

 Patient Groups /  UK / 97 views

Posted 2 months ago

Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...

 Patient Groups /  UK / 65 views

Posted 2 months ago

The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...

 Patient Groups /  UK / 74 views

Posted 2 months ago

Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...

 Patient Groups /  UK / 101 views

Posted 2 months ago

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

 Patient Groups /  UK / 62 views

Posted 2 months ago

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

 Patient Groups /  UK / 88 views

Posted 2 months ago

The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...

 Patient Groups /  UK / 77 views

Posted 2 months ago

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

 Patient Groups /  UK / 76 views

Posted 2 months ago

The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...

 Patient Groups /  UK / 64 views

Posted 2 months ago

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

 Patient Groups /  UK / 68 views

Posted 2 months ago

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

 Patient Groups /  UK / 71 views

Posted 2 months ago

Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and...

 Patient Groups /  UK / 61 views

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