Reports on People with Down syndrome speaking up worldwide

Project Report | Apr 1, 2026
World Down Syndrome Day Events

By Robin Gibson | Inclusion and Self-Advocacy Lead

Geneva

Dear Supporter,

Thank you for being part of something truly special.

Every year on March 21st, the world comes together for World Down Syndrome Day. This year, thanks to supporters like you, we were able to help people with Down syndrome speak up and be heard on a global stage.

This year's theme was "Together Against Loneliness" - and it's a topic that really matters. Everyone feels lonely sometimes, but for many people with Down syndrome and other intellectual disabilities, loneliness is a much bigger part of daily life. Our network of over 160 member organisations came together to bring this important issue into the spotlight.

Here's what Down Syndrome International got up to:

In Geneva

We teamed up with the United Nations Office at Geneva, the European Down Syndrome Association, and ART 21 to put on a packed programme of events, including:

• A World Down Syndrome Day celebration at the United Nations building (19 March)
• A workshop where people with Down syndrome practised speaking up for themselves (21 March)
• An inclusive show and gala evening (21 March)

In New York

On 23rd March, we hosted the 15th World Down Syndrome Day Conference at the United Nations headquarters in New York. Over 40 self-advocates and other experts took to the stage to talk about the real impact of loneliness and what needs to change. Together, we called on world leaders to take action so that people with Down syndrome and other disabilities are truly included in their communities.

You can watch a recording of the New York conference here

None of this would be possible without you. Your support helps us give people with Down syndrome a voice on the world stage - and that makes a real difference.

Thank you,
The Down Syndrome International Team

New York

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Nov 28, 2025
Global Self-Advocacy Research: An Update

By Robin Gibson | Inclusion and Self-Advocacy Lead

At Down Syndrome International (DSi), we want people with Down syndrome to be included in important decisions about their lives. But in many countries, this still does not happen.

To help change this, we have started a new global research project on self-advocacy. We are already working closely with our self-advocacy network group, who are helping us plan the project and make sure people with Down syndrome lead this work from the very beginning.

Self-advocacy helps people with Down syndrome speak up, share their ideas and make real change. Many organisations want to support self-advocacy but do not always have the knowledge or resources to start. At the same time, many of our member organisations already have strong self-advocacy work that we can learn from and share with others.

What we want to find out

We want to build a clear picture of self-advocacy around the world. We want to understand what self-advocacy looks like in different countries and how many people and organisations are involved. We also want to learn what our members already know about self-advocacy, what challenges they face, and what support or resources already exist. Most importantly, we want to understand how DSi can help grow and strengthen self-advocacy in more places.

How we will collect information

To do this, we will gather information through surveys, focus groups and one-to-one interviews. We will be speaking with our member organisations, partner organisations, self-advocacy networks, and also universities and researchers who can help us learn more.

What we will do with the information

Once we have this information, we will use it to build a global self-advocacy strategy. We will also share great examples of self-advocacy from around the world and create new tools and resources to help groups start and grow. This will help all organisations support self-advocacy in stronger and more effective ways.

This project has already begun, and we are excited to keep moving forward with our self-advocacy network group and our global community. Together, we can build a world where people with Down syndrome are heard, included and able to shape their own futures.

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Jul 29, 2025
The DSi Self-Advocacy Network Grows Stronger

By Robin Gibson | Inclusion and Self-Advocacy Lead

Self-Advocacy Network Group

Thank you for your continued support! We have been busy working on self-advocacy projects with our network.

DSi Self Advocacy Network Group

We held our first meetings for a new working group called the DSi Self Advoacy Netwok Group. It is a space for DSi members to share their experiences and ideas about self-advocacy, support each other, better understand each other’s work and challenges in organising self-advocacy activities. All the organsiations involved have two representatives, of which at least one is a person with Down syndrome,

We are meeting online every three months and have 10 countires repesented: Bangladesh, New Zealand, Austalia, Georgia, China, South Africa, Ireland, Turkey, England and Argentina.

We heard lots of great presentations from self-advocates with Down syndrome. They talked about the self-advocacy programmes they are part of and their plans for the future.

Self-Advocacy training in China

We had an amazing time visiting our member organisation ‘Up For Down’s China’ in July. Our programme team were there to run a four-day training on self-advocacy.

The training looked at how Self-advocacy helps people with Down syndrome live better lives. By giving them confidence to speak up, make decisions, and take part in their communities.

The main themes of the training were:

• How to support self-advocates
• How to start or grow self-advocacy groups
• Building stronger, more inclusive programs
• Learning from local and international success stories

This training is a really important step to help more people with Down syndrome in China feel confident, speak for themselves, and play a bigger part in their communities. We're very excited to see all the great things these amazing people will do!