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 firstname.lastname@example.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!
This week’s blog is written by Rebecca Middleton, Founder of the rare disease patient group, Hereditary Brain Aneurysm Support (HBA Support). HBA Support was founded in September 2022 in response to Rebecca’s personal rare journey. Rebecca shares her story and how HBA Support came into existence.