The National Down Syndrome Policy Group

13/06/2026

🥇 Congratulations to our co-founder Rachael Ross on being appointed an Officer of the Order of the British Empire (OBE) in The King’s Birthday Honours List.

Through her work with the National Down Syndrome Policy Group and Portsmouth Down Syndrome Association, Rachael has worked tirelessly to improve outcomes for people with Down syndrome and their families, helping to drive forward policy change, awareness, and recognition of the specific needs of people with Down syndrome across the UK particularly with the Down Syndrome Act.

This honour is richly deserved.

Read more here:

Charity chair hopes award will shine a light on the charity’s cause

12/06/2026

A second research paper on Down syndrome has now been published in The Lancet, this time focusing on issues such as ageing, dementia and lifelong health.

Key messages from the paper include:
* poorer outcomes are not inevitable
* earlier recognition and diagnosis matter
* better training for professionals is needed
* coordinated healthcare can improve quality of life
* adults with Down syndrome should not be overlooked within healthcare systems or wider society

The paper reinforces the need for informed, high-quality support throughout the whole of a person’s life to help improve outcomes for the Down syndrome community. Thanks to our Trustee Dr Liz Corcoran for her work on this research.
https://www.thelancet.com/journals/lanhl/article/PIIS2666-7568(26)00034-6/fulltext

11/06/2026

Major new research on Down syndrome and healthcare has just been published in The Lancet journal as part of a new two-paper series.

The research highlights significant health inequalities faced by people with Down syndrome, while also making clear that many poorer outcomes are not inevitable. With the right healthcare, communication and support, people with Down syndrome can and do live healthier, fuller lives.

The research also recognises the challenges families face navigating fragmented services, poor communication and low expectations.

At a time when people with Down syndrome continue to experience shorter life expectancy and poorer health outcomes, this paper provides strong evidence for improving services and ensuring people with Down syndrome receive the dignity, respect and support they deserve throughout life.

Thanks to our Trustee Dr Liz Corcoran for her work on this research.

Here's the link to the research: https://www.thelancet.com/action/showPdf?pii=S2352-4642%2826%2900122-7

09/06/2026

Too often, people with Down syndrome are underestimated or kept at the margins of what we call an inclusive society.

Otto Baxter challenges those assumptions every single day.

We are delighted to welcome Otto — filmmaker, actor, performer and BAFTA Breakthrough recipient — as an Ambassador for the National Down Syndrome Policy Group 💙

Otto’s work powerfully challenges stereotypes and shows why representation matters, both on screen and in society.

“I’m really looking forward to being an ambassador and letting people know about the brilliant work that we do with NDSPG”.

Welcome Otto ✨

22/05/2026

🏊 Fantastic news. Our very own Jake Binns from the Advisory Group has been selected to swim in this year’s Special Olympics in Birmingham 26 to 30th August.

This has been a dream of his for a long time. Well done Jake 👏👏👏

And he would appreciate it so much if you can help him to fund this trip.

18/05/2026

“I’m so proud” Ted said after he completed the adapted for The National Down Syndrome Policy Group.

Thanks Ted. We’re so proud of you too 😊

There’s still time to show Ted your support: https://www.justgiving.com/page/ted-emrys-jones-7?utm_medium=FR&utm_source=CL

08/05/2026

🐦‍🔥 The Firebird drama group will be putting on The Tempest at The Old Vic Theatre in Bristol on the 22/23/24/25 July. Jake is part of our Advisory Group, is acting in this play and he wanted us to invite you along. See the link below for details

Ps they are always looking for new members

Tickets go on sale to our Circle Members on Thu 23 Apr, Thunder members on Mon 27 Apr, Lavender members on Tue 28 Apr, and Orange Members on Wed 29 Apr, at…

09/04/2026

We need more opportunities like this for people with Down syndrome to help them thrive ❤️

07/04/2026

Thanks Bobby Dean for your support 🙌

I really enjoyed joining Get On Downs at their recent event in Wallington.

It was great to see children enjoying all the activities on offer and to hear from parents and carers about the vital support this local charity provides all year round.

One key issue raised with me was the need for an education system that properly supports children with Down's Syndrome – I’ve raised this in Parliament and will continue to press the Government on it.