Rare Disease Day is an annual international day aimed at raising awareness and highlighting the needs of people with rare conditions.
Genetic Alliance hosted a Rare Disease Day 2025 reception at Holyrood Palace in Edinburgh on Tuesday 18th March.
They brought the rare disease community together to recognise the day with parliamentarians, health professionals, policymakers, researchers, people affected by rare conditions and support organisations.
Our Fundraising Manager, Marlene, along with Dr Pujit Gandhi, who has Adrenomyeloneuropathy (AMN), went along to represent Alex TLC.
They both enjoyed updates from Jenni Minto, Minister for Public Health and Women’s Health and Genetic Alliance UK. The highlight of the evening was hearing from the inspirational speakers, who shared some of the challenges they experience due to their conditions, along with some of the incredible ways they are helping to make a difference for the rare disease community.
The event also seen the launch of More than you can imagine: an anthology of rare experiences, a powerful collection of creative works that bring to life the experiences of individuals within the genetic, rare, and undiagnosed communities through poetry, personal stories, photography, and artwork.
