News & Events

Rare Disease Day 2020

Last Reviewed 15/01/2020

By Harry Foskin

Rare Disease Day is an annual event, recognised by countries around the world that aims to raise awareness about rare diseases, and their impact on patients.

Rare Disease UK will be hosting our annual receptions at the Senedd in Cardiff, the House of Commons in London and in the Scottish Parliament in Holyrood.

Rare disease patients and their families are invited to join politicians and other stakeholders in the rare disease community to mark Rare Disease Day 2020.

Details of the events and links to our Eventbrite pages are below. Please be aware that places are limited for all of these events.

Rare Disease Day 2020 – Senedd Reception

Tuesday 25 February 2020 18:00 – 20:00

The Neuadd/Oriel, The Senedd, Cardiff Bay Link Road, Cardiff, Wales, CF10 4PZ

Speakers include:

– Angela Burns AM, Chair of CPG for Rare, Genetic and Undiagnosed Conditions

– Dr Graham Shortland, Medical Director for Cardiff and Vale UHB and Chair of the Rare Disease Implementation Group

– Sioned Lewis, patient affected by a rare pituitary condition

– Dr Jayne Spink, Chair of Rare Disease UK and Chief Executive of Genetic Alliance UK

For more information, you can contact Genetic Alliance UK’s Policy & Engagement Manager for Wales, Emma Hughes at [email protected]

Register for the Senedd Reception

Rare Disease Day 2020 – Westminster Reception

Wednesday  26 February 2020 12:15 – 14:45

House of Commons, Terrace Marquee St Margaret’s Street, London, SW1A 0AA

Speakers include:

– Baroness Blackwood, Parliamentary Under-Secretary of State for Life Science

– Dr Jayne Spink, Chair of Rare Disease UK and Chief Executive of Genetic Alliance UK 

– Amanda Brodie, patient affected by Cushing’s disease   

For more information, you can contact Genetic Alliance UK’s Policy and Public Affairs Officer, Sophie Peet at [email protected]

Register for the Westminster Reception

Rare Disease Day 2020 – Holyrood Reception

Wednesday 4 March 2020 18:00 – 20:00,

Members’ Room, Scottish Parliament, Edinburgh, EH8 8BS

Speakers include:

– Bob Doris MSP, Chair, Cross Party Group on Rare, Genetic and Undiagnosed Conditions

– Jeane Freeman MSP, Cabinet Secretary for Health and Wellbeing

– Dr Jayne Spink, Chair, Rare Disease UK and Chief Executive of Genetic Alliance UK

For more information, you can contact Genetic Alliance UK’s Policy & Engagement Manager for Scotland, Natalie Frankish at [email protected]

Register for the Holyrood Reception

Invite your Representative

You can also invite your Assembly Member (AM), Member of Parliament (MP) or Member of Scottish Parliament (MSP) to attend. Telling your representative about issues that affect you can be a powerful way to make change and influence decisions about rare diseases. We have put together a letter template to help you write to your MP, AM or MSP ahead of the receptions to raise awareness about rare diseases and tell them about how they can support people with rare conditions in parliament.

AM Letter Template

MP Letter Template

MSP Letter Template

Please let [email protected] know if you contact your representative so we can keep track of potential attendees, and liaise with their offices.

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