Episode 34

EP 34 1 in 70 million - conversation with rare disease advocate David Rose

00:00:00
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00:28:28

April 29th, 2020

28 mins 28 secs

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About this Episode

What’s it like having a disease so rare, you’re misdiagnosed? Or you’re the only one in the whole of the UK to have it?

David Rose is a rare disease advocate, an ambassador for Great Ormond Street Hospital, and part of the team at Rare Revolution magazine, an online magazine dedicated to rare disease patients and their voices. He’s the only known person in the UK to have occipital horn syndrome and he tells us what it’s like to live with a rare disease - and why we should all be more aware of rare disease as a whole.

David and Patrick talk about how others can try to understand rare diseases better, and how anyone can get involved with advocacy work. They also look at the changes people have made due to COVID-19, and how that affects people with rare diseases.