In celebration of Rare Disease Day the Genetic Alliance have launched a report and an anthology.
Rare Disease Day report
Rare Disease Day 2025 is a milestone for the government strategy on rare conditions, the UK Rare Diseases Framework. 2025 is the final year of the existing Framework and to date, there has been no commitment from the new UK government to a continuation of the ambitions of the Framework.
Genetic Alliance UK’s Rare Disease Day policy report will demonstrate the extent of unmet need that continues to exist in the rare condition community. We will make the case for a new UK-wide government strategy on rare conditions and identify 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.
More than you can imagine: an anthology of rare experiences
Genetic Alliance UK will be publishing ‘More than you can imagine: an anthology of rare experiences’ as part of their Rare Disease Day 2025 campaign.
The anthology shares a wide range of experiences from the genetic, rare and undiagnosed communities through creative works such as poetry, stories, photos and drawings. The creative works are all inspired by the phrase ‘more than you can imagine’.