Rare Disease Day Webinar: 29 January 2020
Find out about how you can get involved with Rare Disease Day by joining Rare Disease UK’s webinar on Wednesday 29 January from 13:00 to 14:00. We will discuss how you can access materials (posters, infographics and much more) to raise awareness of rare conditions. Please contact Jurrat to sign up.
Rare Disease Day: Share Your Story
To celebrate Rare Disease Day, Rare Disease UK would like to showcase the diversity of the rare disease community and the variety of experiences people have.
Rare Disease UK is accepting proposals for patient experience blogs from anyone affected by a rare, undiagnosed or genetic condition, to help patients spread awareness of their condition and share their story. If you would like to contribute, please contact Rosie.
We will be looking to secure press coverage for Rare Disease Day, in particular bringing to light the value of alert cards when accessing care from doctors who are unfamiliar with rare diseases. If you have experience of using an alert card, or have received poor care and treatment (where an alert card could have been valuable) please contact Simon to share your story.
Rare Reality Facebook Group
Rare Disease UK is delighted to announce, as part of the Rare Disease Day celebrations, that it will be setting up two new private Facebook groups − one for patients affected by rare conditions and one for parent carers of people affected by rare conditions. The groups will provide a space for the rare community across the UK to come together to share peer support, information and find others affected by the same condition. You’ll also be able to keep up to date with the work of Rare Disease UK and Genetic Alliance UK and find out more about how to help make Rare Disease Day the UK’s biggest awareness day so that no rare condition, no matter how rare, ever gets left behind.
The groups will be launching at the beginning of February, if you would like to register your interest or for more information please email firstname.lastname@example.org.