Rare Disease Day 2026: Welsh Reception Highlights

06 March 2026

AWTTC’s Senior Scientist, Sabrina Rind, who has a particular interest in medicines for rare diseases, was delighted to attend the Welsh Reception for Rare Disease Day 2026 this February.

The event brought together leading voices from across the rare disease community for an evening of insight, discussion, and shared commitment.

A key highlight of the evening was an update on the NICE Quality Standard for Rare Diseases, presented by Dr Graham Shortland. The standard aims to drive meaningful improvements in treatment and care for those living with rare conditions. 

Attendees also heard from Dr Jamie Duckers, who provided an overview of progress in implementing the Welsh Rare Disease Action Plan. His update underscored ongoing efforts to improve coordination and outcomes across Wales. 

Nick Meade shared valuable perspectives from the Genetic Alliance UK “Equity for Rare” report and accompanying community survey, shedding light on the persistent challenges surrounding equitable access to healthcare. 

One of the most powerful moments of the evening came from Rachael Humphreys, who presented an animation capturing young people’s experiences of Behçet’s Syndrome, alongside her own personal story. Her contribution offered a poignant reminder of the real-life impact of these conditions.

The reception also featured an exhibition of personal accounts from individuals living with rare diseases, highlighting the ongoing barriers many face in accessing fair and timely care.

Overall, the event provided a valuable opportunity for networking, reflection, and renewed commitment to improving outcomes for people living with rare diseases.