At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates...
Journals and Articles / 1041 views / Popular
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 927 views / Popular
Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...
Patient Groups / UK / 883 views / Popular
Designed to provide easily accessible and up to date information for anyone affected by genetic,...
Patient Groups / 1495 views / Popular
A brief description of Fragile X Syndrome: how it is caused, its effects, diagnostic tests,...
Learning Resources / UK / 576 views / Popular
The Fragile X Society aims to improve the lives of those affected by Fragile X...
Patient Groups / UK / 685 views / Popular
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 693 views / Popular
Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and...
Patient Groups / UK / 864 views / Popular
Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed...
Patient Groups / UK / 710 views / Popular
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 530 views / Popular
Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...
Patient Groups / UK / 833 views / Popular
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 538 views / Popular
Birt-Hogg-Dubé syndrome is an inherited condition, characterised by the development of fibrofolliculomas (benign skin tumours),...
Patient Groups / UK / 736 views / Popular
Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We...
Patient Groups / UK / 580 views / Popular
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 862 views / Popular
Ataxia UK is the leading charity in the UK that supports people affected by any...
Patient Groups / UK / 629 views / Popular
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 688 views / Popular
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 1014 views / Popular
Alex TLC is a trusted and experienced organisation offering support and information for all those...
Patient Groups / London / 832 views / Popular
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 860 views / Popular