Rare Chromosome Disorder Awareness Day 2025 is being observed on Thursday, 19 June 2025, bringing together families, advocates, and healthcare professionals to highlight the unique challenges and remarkable resilience of those living with rare chromosome and gene disorders.
This year’s theme, “We are Unique… and so are you,” celebrates individuality while fostering a deeper sense of understanding and solidarity.
Organised by the UK-based charity Unique, the 2025 campaign also commemorates the charity’s 40th anniversary—a major milestone in its mission to support, inform and connect affected families.
To mark the occasion, Unique is releasing a special updated edition of its much-loved “Little Red Book”, now featuring powerful, personal stories from across the globe. This collection not only informs but honours the voices and experiences of the rare chromosome community.
Although individually rare, chromosome and gene disorders collectively affect thousands. Awareness days like this one are vital in driving forward research, advocacy, and public understanding. Join us on 19 June to celebrate diversity, raise awareness, and stand in solidarity with a truly unique community.
For more information, please visit: rarechromo.org (opens in a new tab)
Free online event
In conversation with James Coney and Shaun Pye
Thursday 19th June 2025 (1pm BST)
Join Unique on Rare Chromo Day where James Coney, News Projects Editor at The Sunday Times who recently wrote about the experience of receiving a diagnosis of ReNU syndrome for his 12-year-old son Charlie, will be in conversation with Shaun Pye, co-writer of the BBC drama There She Goes (opens in a new tab) about life with his daughter Joey, now 19, who has been diagnosed with DYRK1A syndrome. An event not to be missed!
