By Claire Whitehill
In my role as UK Regional Ambassador for the CSNK2A1 Foundation, I was excited to be invited to attend the Genetic Alliance parliamentary reception at the Houses of Parliament in London hosted by Peter Dowd MP, Chair of the All Party Parliamentary Group on Genetic, Rare and Undiagnosed Conditions. I was pleased to see a fellow member of the Genomics England Participant Panel at the event, as well as the first Panel Chair Jillian Hastings Ward.
Jillian read her poem and explained the inspiration behind her contribution to ‘More than you can imagine: an anthology of rare experiences’. The anthology is a collection of over 60 creative pieces from the genetic, rare and undiagnosed condition community. It captures a diverse range of experiences through creative works such as poetry, stories, photos and drawings. The creative pieces were inspired by the phrase ‘more than you can imagine’. Each submission showcases the impact rare conditions can have on a person’s sense of self, relationships and wellbeing. The anthology can be found here.
Nick Meade, Interim Chief Executive of Genetic Alliance UK launched the Genetic Alliance UK Rare Disease Day 2025 report, ‘More than you can imagine: opportunities for improving the lives of people with rare conditions.' Genetic Alliance UK’s Rare Disease Day policy report demonstrates the extent of unmet needs that continue to exist in the rare condition community. It makes the case for a new UK-wide government strategy on rare conditions, and identifies opportunities for the Government to support people with rare conditions in the current policy landscape and in the context of the new NHS 10 year plan. The report can be found here.