Patient Perspectives on Rare Disease Mar ’18

Read Dawn Gray’s blog post about her recent day out representing r(20) together with Jackie Aley (this was Jackie’s first event attendance for us, and hopefully wont be her last??

Read Dawn’s blog here

Want to hear more about Rare Disease Day events around the country that our volunteers attended this year?

Throughout February 2018 Genetic Alliance’ campaign, Rare Disease UK, hosted numerous events and activities to mark Rare Disease Day and raise awareness of rare conditions.


Receptions were held in the Houses of Parliament, Westminster, the Scottish Parliament, Edinburgh, and the Senedd, Cardiff, and they’ve produced lots of content we can share with you our patient community. You can read all about the highlights of each reception, including guest speakers and learn about the launch of the 100,000 genomes project, here.


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Latest News and Research

Like most people I wanted to volunteer because of a desire to give back to the community and do something for the greater good.
Research has shown that patients and carers who live with a rare disease experience a negative impact on wellbeing and mental health.