The Beacon team has been all over the country in celebration of Rare Disease Day. Join us as we look back at this year’s Rare Disease Day celebrations and see what we thought of each event!
This week’s blog is written by Tracey Harney, who is the proud mum to Isobelle! Tracey shares her rare journey and the chance encounter that led to Isobelle receiving a diagnosis. Spoiler alert: You know the nurse Tracey met!
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!
The drug repurposing landscape is changing and so is our Drug Repurposing for Rare Diseases Conference 2022! Learn how now.
This week’s blog was written by the wonderful Victoria Arreola, Founder and CEO of Strong and Rare Parenting. Victoria shares her personal Strong and Rare journey, how she took civic action, why she created her podcast and more. She leaves with a vital message that deserves your attention. Read now.