People living with rare disease often face a diagnostic odyssey, typically waiting years for a...
Journals and Articles / 1566 views / Popular
The idea for AcroTales came about after a project co-ordinated by Dan Jeffries, Tessa Murdoch and...
Learning Resources / 1087 views / Popular
Addison’s Disease is a rare endocrine condition where the adrenal glands cease to function, so that your...
Patient Groups / UK / 953 views / Popular
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 854 views / Popular
Alex TLC is a trusted and experienced organisation offering support and information for all those...
Patient Groups / London / 822 views / Popular
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 1003 views / Popular
Alström Syndrome UK (ASUK) is a charity who provide information, support and advice for individuals...
Patient Groups / 329 views
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 679 views / Popular
A UK-registered charity, AMEND is a patient group providing information and support services to families...
Patient Groups / 476 views
Ataxia UK is the leading charity in the UK that supports people affected by any...
Patient Groups / UK / 623 views / Popular
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 856 views / Popular
Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We...
Patient Groups / UK / 572 views / Popular
Birt-Hogg-Dubé syndrome is an inherited condition, characterised by the development of fibrofolliculomas (benign skin tumours),...
Patient Groups / UK / 729 views / Popular
We are a national patient-based information and support charity. Predominantly we provide resources for patients,...
59 views
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 528 views / Popular
Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...
Patient Groups / UK / 822 views / Popular
CHAMP1 UK is a charity who provide information, support and advice for individuals affected by...
72 views
The Children’s Hyperinsulinism Charity (1165562) Our Charity was set up in February 2016 after a...
294 views
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 521 views / Popular
CJD is one of a group of rare and invariably fatal diseases called prion diseases,...
Patient Groups / 670 views / Popular
