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

Rare Disease UK

National Alliance
Farhana Ali

Events

Colour Flair for Rare
Northern Ireland

COLOUR FLAIR FOR RARE Rare Disease Day 2021 Delighted to share our #RareDiseaseDay Colouring Challenge to raise awareness. Its a… Continue reading Colour Flair for Rare

Belfast City Hall Light Up
Northern Ireland

Northern Ireland Rare Disease Partnership (NIRDP) are really excited to share that the Iconic Belfast City Hall, in Northern Ireland will… Continue reading Belfast City Hall Light Up

Virtual “Rare Coffee & Cake” for Rare Disease
Virtual All over the world

Our Rare AHC Event: A Virtual “Rare Coffee & Cake” for International Rare Disease Day 2021 and collecting funds for Alternating Hemiplegia… Continue reading Virtual “Rare Coffee & Cake” for Rare Disease

Light up at Tower 42
London

We will light the top of tower 42 in rare dieseaae day colours in 28th Feb 2021!

WHAT DOES RARE MEAN TO ME

What does RARE mean to me? – HWTH Health Awareness Campaign

IGMM Shining a light on XLH Rickets – a rare bone disease
Edinburgh

On 2 March, people living with XLH, a rare genetic bone disease, as well as scientists, staff and students from… Continue reading IGMM Shining a light on XLH Rickets – a rare bone disease

Wellbeing for those affected by myotubular and centronuclear myopathy
LONDON

Coping Through Covid and Beyond A health and wellbeing presentation, delivered by Dr Christianna Kyriacou, Counselling Psychologist, Royal Brompton Hospital.… Continue reading Wellbeing for those affected by myotubular and centronuclear myopathy

RARE/D LIVE 2021 – RARE CANCERS – LIVE PODCAST RECORDING

RARE CANCER – how rare is rare?’ 11am-1pm GMT  Sunday 28th February 2021 Join our live audience for a special… Continue reading RARE/D LIVE 2021 – RARE CANCERS – LIVE PODCAST RECORDING

Webinar: Lesson from 2020; Together we can do the imposible
Virtual

Join us for a Rare Disease Day Webinar Friday, February 26 10 -11 am ET 3 – 4 pm GMT… Continue reading Webinar: Lesson from 2020; Together we can do the imposible

Other Friends