United Kingdom

The United Kingdom has engaged in Rare Disease Day since its beginning in 2008. Taking a political approach, many patient organisations have held receptions and debates focused on rare disease policy in local and national parliaments. In previous years, celebrations have spanned up to 13 cities with conferences, family days and a fundraising dinner.

The UK held a vast number of events in 2020 aimed at raising awareness for rare diseases. Ranging from its first ‘Rare’ film festival to a drug repurposing conference to a traditional british tea party and gala dinner. Inclusive efforts were seen across the country providing activities for all members of the rare disease community. Genetic Alliance UK held receptions in cities in Scotland, Wales and England to spread important messages to the community.

You can also get involved! Do you know of any events not listed here? Email us at [email protected].

National Alliances

The Neurological Alliance

National Alliance
Miranda Lloyd

Genetic Alliance UK

National Alliance

Rare Disease UK

National Alliance
Farhana Ali

Events

Other Friends

The Whitworth Group

Country Organiser

PIP-UK

Country Organiser

International XLH Alliance

Country Organiser

Newcastle University

Country Organiser

University of Wolverhampton

Country Organiser

UK Renal Registry

Country Organiser

Viapath

Country Organiser

OcuMel UK

Country Organiser