We produce a weekly blog to share what we’ve been up to, stories from the rare disease world, interesting info on our projects, and more.

Every week we put our fingertips to keyboards to bring you, our community, stories of what we’ve been up to, things we’ve found interesting, and updates from our projects. Released every Friday, our blog is also regularly written by guests who openly share their experiences. We hope you enjoy reading our little instalments!

If you would like to share your own story on our blog, please contact Blayne, our Marketing and Engagement Manager: [email protected]

The Power in a Name: Teaching future doctors the value of providing a definitive diagnosis in the support of patients with rare disease

This week’s blog features one of the outstanding entries we received for our 2018 Student Voice essay competition. Here, Megan McGlone from the University of Glasgow explores the impact of diagnosis on rare disease patients’ ability to identify with a community and receive the support they so urgently require.

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