2025 End of year message
Dear Friends, Allies and members of Down Syndrome International (DSi),
As 2025 comes to an end, I am proud of all we have accomplished together.
Our mission remains to ensure people with Down syndrome can live the lives they choose, with equal rights and opportunities.
This year’s progress is thanks to your dedication and support.
I want to acknowledge the outstanding work of the small but mighty team at DSi, led by our Executive Director, Andrew Boys.
The DSi Board’s commitment and support are also deeply appreciated.
Our Global Impact on Health
A significant milestone for DSi in 2025 was the July publication of ‘Our Say in Our Health’, the first global report on health equity for people with intellectual disabilities, produced with Humanity & Inclusion.
Drawing on input from over 750 individuals and 118 organisations across more than 100 countries, this research is already advancing our advocacy for better healthcare worldwide.
This is a piece of work we should all be extremely proud of.
Advocacy on the World Stage
This year, people with Down syndrome took leading roles at major global events.
Board member Janet Charchuk co-chaired the Civil Society Forum at the Global Disability Summit in Berlin and presented on the main health panel with leaders from WHO, UNFP, the Lancet Commission on Disability, and government ministers.
Janet, Ambassador Morgan Maze, and Inclusion and Advocacy Officer Emma Bishop also shared preliminary health findings from our global consultation with leaders from WHO, UN Women, and government representatives.
Building Our International Network
Collaboration makes us stronger.
In 2025, we created our first two issue-specific network groups; Health Equity and Self-Advocacy.
- The Health Equity Network Group has 55 members from 43 organisations. The group has been sharing advocacy challenges from their countries. For example, one member in Ethiopia described patients with Down syndrome being denied life-saving heart treatment and their struggles to address discrimination by doctors.
- The Self-Advocacy Network Group currently has 19 members from 9 organisations and is co-chaired by representatives from the United Kingdom and New Zealand, including two people with Down syndrome.
Sharing Knowledge and Training New Leaders
In July 2025, DSi staff were invited to Hangzhou, China, to train 20 participants on establishing and running self-advocacy groups for people with Down syndrome.
This was the first training of its kind in China.
Since then, participants have formed a WeChat group to share knowledge nationwide, and some trainees with Down syndrome are now leading sessions on the UN Convention on the Rights of Persons with Disabilities.
This demonstrates how local action can drive global change.
Shaping Global Health Policy with the WHO
We have been hard at work behind the scenes, playing a foundational role in advising the WHO on the launch of its new Disability Health Equity Network throughout 2025.
This Network, which launched in September 2025, is a significant global effort, involving UN member states, civil society, and organisations of persons with disabilities.
We are proud to be co-chairing one of the network’s key workstreams on building leadership of organisations of persons with disabilities.
Our Programme Director spoke at the inaugural meeting of the network at WHO HQ in Geneva in November, ensuring that the voices and priorities of people with Down syndrome are at the heart of global health policy.
Thank You
To everyone in our community—people with Down syndrome, their families, member organisations, and especially our generous donors—thank you. Your commitment and generosity make our work possible. Together, we are building a better and more inclusive world.
We look forward to continuing this vital work with you in the new year.
Bridget Snedden ONZM
President, Down Syndrome International
Down Syndrome International is dedicated to improving the quality of life and advocating for the rights of people with Down syndrome globally.
Your support enables us to drive positive change through life changing projects.
