Stephanie Ernst, Founder of TAPS Support, shares how her twin girls were diagnosed with twin to twin transfusion syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS) – a rare disease affecting twins. Read her rare journey now.
We’re so excited to introduce our new Fundraising Officer, Faith, who joined the Beacon team last week! Get to know the newest member of our team and email her at faith@rarebeacon.org to say hello!
Share your lived experiences with a doctor, nurse or scientist of tomorrow through the Patient Group Pairing Scheme. Apply to be paired with a student for The 2022 Student Voice Prize to discuss your rare journey and insights with an up-and-coming medical student!
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 our Fundraising Officer, Sophia! Sophia is sadly leaving us to pursue a Masters in Education at University College London (UCL) at the end of September. We are gutted to lose such an integral member of our team, but we’re so excited for Sophia as she embarks on this exciting, new journey. Beacon won’t be the same without her, so join us as we say farewell and thank you to Sophia. We’ll miss you!