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.
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 firstname.lastname@example.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!