Rare Disease Day 2019

Sign up to celebrate Rare Disease Day 2019. We will be hosting our annual receptions at the Senedd in Cardiff, the House of Commons in London and the Scottish Parliament Building 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 2019, officially held on 28 February.

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


WHEN: 18:00 – 20:00, Thursday 14 February 2019.

Sign up here.


WHEN: 13:00 – 15:00, Wednesday 27 February 2019.

Sign up here.


WHEN: 18:00 – 20:00, Tuesday 5 March 2019.

Sign up here.


You can also invite your Member of Parliament (MP), Assembly Member (AM), or Member of Scottish Parliament (MSP) to attend too. 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.

MP letter template

AM letter template

MSP letter template

Remember to vote for your favourite...