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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.

Advocacy also played a big role in Rare Disease Day 2018 in the UK with receptions at the different National Assemblies and a focus on the implementation of Rare Disease Plans and Cross Party cooperation. Another highlight of Rare Disease Day 2018 in the UK was when children took over a rare disease publication for one of its issues to produce a more accessible, informative and engaging publication for children on rare diseases. At one school students and teachers dressed up as fairy tale characters to recognise the day, while elsewhere people shared research while eating cake or fish and chips, in a typically British fashion. As in the rest of the world face painting also played a big part in the Rare Disease Day celebrations, as part of the #ShowYourRare campaign.

You can also get involved! Do you know of any events not listed here? Email us at [email protected].

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