People living with rare disease often face a diagnostic odyssey, typically waiting years for a...
Journals and Articles / 1558 views / Popular
The idea for AcroTales came about after a project co-ordinated by Dan Jeffries, Tessa Murdoch and...
Learning Resources / 1082 views / Popular
Addison’s Disease is a rare endocrine condition where the adrenal glands cease to function, so that your...
Patient Groups / UK / 943 views / Popular
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 843 views / Popular
Alex TLC is a trusted and experienced organisation offering support and information for all those...
Patient Groups / London / 816 views / Popular
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 993 views / Popular
Alström Syndrome UK (ASUK) is a charity who provide information, support and advice for individuals...
Patient Groups / 321 views
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 675 views / Popular
A UK-registered charity, AMEND is a patient group providing information and support services to families...
Patient Groups / 470 views
Ataxia UK is the leading charity in the UK that supports people affected by any...
Patient Groups / UK / 618 views / Popular
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 849 views / Popular
Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We...
Patient Groups / UK / 568 views / Popular
Birt-Hogg-Dubé syndrome is an inherited condition, characterised by the development of fibrofolliculomas (benign skin tumours),...
Patient Groups / UK / 720 views / Popular
We are a national patient-based information and support charity. Predominantly we provide resources for patients,...
55 views
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 523 views / Popular
Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...
Patient Groups / UK / 817 views / Popular
CHAMP1 UK is a charity who provide information, support and advice for individuals affected by...
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The Children’s Hyperinsulinism Charity (1165562) Our Charity was set up in February 2016 after a...
288 views
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 514 views / Popular
CJD is one of a group of rare and invariably fatal diseases called prion diseases,...
Patient Groups / 659 views / Popular