This week’s blog is written by Alex Gaudlap! Alex’s firstborn son was diagnosed with the rare condition, VAMP2. She shares her rare journey to help others living with VAMP2 and those living with a rare disease. You can follow Alex’s journey on her website, Instagram and Facebook!
This week’s blog was written by Laura Hattersley, Founder and Director of the CASK Research Foundation. Laura picked up the baton for her daughter Sarah and other CASK warriors by founding the UK rare disease organisation CASK Research Foundation in January 2022. Her organisation is passionate about helping to find treatments for CASK gene mutations. Read Laura’s rare journey.
Learn why you should attend Beyond the Student Voice Prize 2022 on Rare Disease Day! The event is an informal opportunity to meet fellow entrants to the competition, connect with patient group advocates and hear from those working actively in rare diseases. Register now!
We’re thrilled to introduce our new Scientific Officer, Chloe who joined the Beacon team in November 2022! Get to know one of the newest members of our team and email her at chloe@rarebeacon.org to say hello.
2022 went by in the blink of an eye! See what our Cambridge rare disease charity and patient advocacy groups achieved together this year.