NATIONAL ALLIANCE

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Genetic Alliance UK

United Kingdom


Rare Disease Day in 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 ALLIANCE

Genetic Alliance UK logo
Genetic Alliance UK

FRIENDS IN United Kingdom

Events in United Kingdom


Wellbeing for those affected by myotubular and centronuclear myopathy image
Wellbeing for those affected by myotubular and centronuclear myopathy

Coping Through Covid and BeyondA health and wellbeing presentation, delivered by Dr Christianna Kyriacou, Counselling Psychologist,...

06 Mar 2021 - London

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IGMM  Shining a light on XLH Rickets - a rare bone disease image
IGMM Shining a light on XLH Rickets - a rare bone disease

On 2 March, people living with XLH, a rare genetic bone disease, as well as scientists, staff and students from across the...

02 Mar 2021 - Edinburgh

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We Are Pituitary Virtual Conference image
We Are Pituitary Virtual Conference

We are excited to announce that we will be hosting our first ever Virtual Conference, running from 1st - 6th March 2021. Videos...

01 Mar 2021 - 06 Mar 2021

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Light Up for Rare image
Light Up for Rare

Thank you councillor Emlyn Dole. Leader @CarmsCouncil for arranging County Hall #Carmarthen #Wales to be lit up to mark Rare...

28 Feb 2021 - Carmarthenshire

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Light up at Tower 42 image
Light up at Tower 42

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

28 Feb 2021 - London

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Rare Disease Day Virtual Musical RariTea image
Rare Disease Day Virtual Musical RariTea

Virtual Musical RariTea – 28th February 2021 @3pm RariTea is the NIRDP campaign to encourage people to get together and...

28 Feb 2021 - Northern ireland

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Belfast City Hall Light Up image
Belfast City Hall Light Up

Northern Ireland Rare Disease Partnership (NIRDP) are really excited to share that the Iconic Belfast City Hall, in Northern...

28 Feb 2021 - Northern ireland

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Rare Disease Day 2021 - 10 Years On! image
Rare Disease Day 2021 - 10 Years On!

The Adenomyosis Advice Association is working hard on this year's Rare Disease Day 2021 campaign and in this our 10th year...

28 Feb 2021 - Uk

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United Kingdom's Rare Disease Day Illuminations image
United Kingdom's Rare Disease Day Illuminations

The following locations/landmarks in the United Kingdom will be illuminated to mark 2021 Rare Disease Day:- Bradford City...

28 Feb 2021

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Stargardt’s Connected Community Meeting image
Stargardt’s Connected Community Meeting

On Rare Disease Day join us for a 2-hour special virtual meeting of our international Stargardt's Community, bringing together...

28 Feb 2021 - Virtual

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Virtual comedy night for Poland Syndrome Charity image
Virtual comedy night for Poland Syndrome Charity

To coincide with Rare Disease Day on 28th February, Andrew Roach Talent and Ingenious Fools are pleased to announce that...

28 Feb 2021

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RARE/D LIVE 2021 - RARE CANCERS - LIVE PODCAST RECORDING image
RARE/D LIVE 2021 - RARE CANCERS - LIVE PODCAST RECORDING

RARE CANCER – how rare is rare?’ 11am-1pm GMT  Sunday 28th February 2021Join our live audience for a special podcast event...

28 Feb 2021

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WHAT DOES RARE MEAN TO ME image
WHAT DOES RARE MEAN TO ME

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

28 Feb 2021

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Rare Moms Talk Rare Diseases – Rare Disease Day 2021 IG Live image
Rare Moms Talk Rare Diseases – Rare Disease Day 2021 IG Live

Rare diseases are not as uncommon as they seem. More than 300 million people are affected by a rare disease, not to mention...

28 Feb 2021

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Virtual "Rare Coffee & Cake" for Rare Disease image
Virtual "Rare Coffee & Cake" for Rare Disease

Our Rare AHC Event:A Virtual "Rare Coffee & Cake" for International Rare Disease Day 2021 and collecting funds for Alternating...

28 Feb 2021 - 07 Mar 2021 - Virtual all over the world

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Rare Disease Day at Royal Holloway 2021 image
Rare Disease Day at Royal Holloway 2021

On Friday 26 February 2021 we will run a virtual event directed to secondary school years 10, 11 and 12. We will very much...

26 Feb 2021

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

Join us for a Rare Disease Day WebinarFriday, February 2610 -11 am ET 3 - 4 pm GMTThe Oxford-Harrington Rare Disease Centre...

26 Feb 2021 - Virtual

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Virtual Parliamentary Event image
Virtual Parliamentary Event

Virtual Parliamentary EventRare Disease Day is an opportunity for the rare community to come together to raise awareness...

24 Feb 2021 - Online

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Colour Flair for Rare image
Colour Flair for Rare

COLOUR FLAIR FOR RARERare Disease Day 2021Delighted to share our #RareDiseaseDay Colouring Challenge to raise awareness....

24 Feb 2021 - 27 Mar 2021 - Northern ireland

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Sheffield Autism Research Lab (ShARL) Rare Disease Day activity image
Sheffield Autism Research Lab (ShARL) Rare Disease Day activity

Sheffield Autism Research Lab (ShARL) will be publishing a Rare Disease Day blog series and informative videos about our...

21 Feb 2021 - 28 Feb 2021 - Sheffield

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World of Rare Disease Pop Quiz image
World of Rare Disease Pop Quiz

World of Rare Disease Pop QuizFeatured on the NI Science Festival Schools & Educators ProgrammeTuesday 9 February - Thursday...

09 Feb 2021 - 11 Feb 2021 - Northern ireland

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Show your colours Share your story image
Show your colours Share your story

We share our colours, our stories of people with the rare disease XLH (X-linked hypophosphatemia), daily on our social media...

03 Feb 2021 - 28 Feb 2021

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