Farewell and good luck to our beloved Phil!
Our Senior Projects Officer, Philippa is leaving our rare diseases charity in May after three and half wonderful years. Read the announcement.
NEW Season 2 ‘Talking in Tandem’ guest illustrations!
View Maryna Kolochavina’s podcast illustrations! She kindly produced these illustrations for the Rarely Heard podcast on a voluntary basis.
We’re published in the Rare Disease Day Campaign 2023!
Our CEO and Marketing & Engagement Manager are published in MediaPlanet UK’s Rare Disease Day campaign! They share how the rare community is working to repurpose drugs. Read now!
This is Rare: The voice of the rare community
Our Senior Projects Officer, Philippa joined This is Rare, a Sanofi UK-sponsored campaign that puts the voices of the rare disease community centre stage. She and the rare community attended Abbey Road Studios to share the rare experience through music and song. Watch This is Rare performance!
Our friend is running the GEAR 10K in King’s Lynn for Beacon!
Our friend, Juliet is running the GEAR 10K in King’s Lynn (also known as the Grand East Anglia Run) in support of our rare diseases charity! She’s fundraising to support our patient group training and events. Learn more!