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