This year was the first time three members of our team attended the World Orphan Drug Congress Europe, so learn what it was like for Eve, Hannah and Philippa to attend the largest and most established orphan drugs and rare diseases meeting of its kind across the globe now!
Relive Drug Repurposing for Rare Diseases! Our drug repurposing conference highlighted the repurposing of drugs across the UK and Europe. View photos and recordings now!
Beacon for rare diseases turned 10 on 7 November 2022! Three of our oldest Beacon team members share their favourite moment from the decade. Read now!
We’re so excited to introduce our new Senior Scientific Officer, Eve who joined the Beacon team this October! Get to know the newest member of our team and email her at eve@rarebeacon.org to say hello.
This week’s blog is written by Rhys Holmes, who you may know from Drug Repurposing for Rare Diseases 2022! Rhys was diagnosed with the rare neurodegenerative disease superficial siderosis. He joined us at #DrugRepo22 to share his rare journey about losing his hearing and how an off-label drug, deferiprone, has improved his quality of life. Rhys summarises his experience at our Drug Repurposing for Rare Diseases conference!
In honour of World Mental Health Day on 10 October 2022, Rare Patient Voice helped to launch “Beyond Limits: Rare Men Talking Mental Health,” a new short film from our rare disease patient/advocate David Ross! Watch his film now!