DSRF UK is delighted to announce the publication of two important articles this week in The Lancet, centred on Down Syndrome.

Dr Elizabeth Corcoran, Chair of DSRF UK, contributed to the research and describes why these articles present a transformative shift that the Down syndrome community has been seeking for decades.

“The release of these papers marks a moment in history for people with Down syndrome and their families. They have long been failed by fragmented care, and by delays in diagnosis, by poor coordination of care, and inaccessible communication. As family members, we have often borne the burden of this. These papers clearly invite us to step forward into a new way of supporting people with Down syndrome to live their best lives. The papers urge us to design healthcare with people with Down syndrome, to meet their needs pro-actively, and to integrate everything we have learned so far from the evidence base around Down syndrome.”

Lead Researchers at Stellenbosch University describe the profound shift that is needed in healthcare for the Down syndrome community – a clear new direction laid out through the evidence presented in these papers:

“These findings matter because they challenge longstanding assumptions about Down syndrome and healthcare. Historically, research and healthcare have often focused on limitations, deficits, or survival. Our studies show that this approach is incomplete. People with Down syndrome are living longer than ever before, and many health inequalities they experience are avoidable. The evidence shows that health outcomes improve when healthcare systems support autonomy, communication, relationships, and long-term wellbeing, not just medical treatment. The studies also demonstrate why lived experience matters in research. By directly engaging people with Down syndrome and families, we were able to identify barriers that traditional clinical data alone would miss, including fear, exclusion, stigma, exhaustion from navigating systems, and the emotional impact of poor communication. Just as importantly, people with Down syndrome also showed us what good healthcare feels like: trust, dignity, continuity, kindness, and being treated as an active participant in decisions about their own life.”

These articles are free to download by following the links below, and setting up a free account with The Lancet. Please share!

Advancing healthcare access to optimise health and quality of life for children and young people with Down syndrome worldwide. Smythe T, Moyo-Chilufya M, Wilbur J, Greenland K, Engelbrecht A, Kumar M, Hlyva O, Kuper H, Corcoran E (2026). Lancet Child & Adolescent Health.

https://www.thelancet.com/journals/lanhchi/article/PIIS2352-4642(26)00122-7/fulltext

Strengthening healthcare pathways for people with Down syndrome. Greenland K, Nguweneza A, Wilbur J, Moyo-Chilufya M, Hlyva O, Tuffrey-Wijne I, Kuper H, Corcoran E, Smythe T (2026). Lancet Healthy Longevity.

https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(26)00034-6/fulltext