Organization
Rare Disease UK(RDUK)
The national alliance for people living with rare, genetic, and undiagnosed conditions in the UK, run by Genetic Alliance UK. Rare Disease UK advocates for faster diagnosis and better treatments, and supports families navigating undiagnosed conditions through its SWAN UK peer programme.
About
Rare Disease UK is the national campaign and alliance led by Genetic Alliance UK, a charity representing patient groups for rare and genetic conditions. With over 220 member organisations — including patient groups, academic researchers, clinicians, and industry partners — RDUK is the central advocacy platform for the approximately 3.5 million people in the UK living with a rare disease. It organises Rare Disease Day UK every 28 February.
What They Do
RDUK advocates to UK and devolved governments for implementation of the UK Rare Diseases Framework, pushing for faster diagnosis, access to specialist centres, and affordable treatments. Its SWAN UK (Syndromes Without A Name) programme supports families of children with undiagnosed conditions through a peer network and specialist resources. Genetic Alliance UK conducts evidence reviews and policy submissions.
Who They Serve
People living with rare, genetic, and undiagnosed conditions in the UK — children and adults — as well as their families and carers. Also serves rare disease patient groups, researchers, and clinicians who participate in the alliance network.
Related Organizations
Autistic Self Advocacy Network(ASAN)
FeaturedWashington, DCNationalASAN is a national advocacy organisation run by and for autistic people, working to advance the rights of autistic people through public policy, community-building, and direct support. Their motto is "Nothing About Us Without Us."
Disabled-LedAutismAdvocacyThe Arc
FeaturedWashington, DCNationalThe Arc is the largest national community-based organisation in the United States for and with people with intellectual and developmental disabilities (IDD) and their families, with more than 600 chapters nationwide providing direct services and advocacy.
Mixed LeadershipIntellectual & Developmental DisabilityAdvocacyNational Federation of the Blind(NFB)
FeaturedBaltimore, MDNationalThe NFB is the largest organisation of blind people in the US, with over 50,000 members organised in chapters in all 50 states. Led entirely by blind people, NFB is known for its strong civil rights stance, its flagship Jernigan Institute, and landmark accessibility litigation including the Target.com lawsuit.
Disabled-LedBlind / Low VisionAdvocacy