Advisory Group

Join our Advisory Group

At the National Down Syndrome Policy Group, we believe in making a difference through dedicated advocacy, unwavering support, and the empowerment of individuals with Down syndrome and their families. Our Advisory Group is at the heart of this mission, championing change and guiding our organisation towards a more inclusive and equitable future.

Our Mission

Our Advisory Group is committed to shaping policies and practices that enhance the lives of those with Down syndrome. Through collaboration with policymakers, educators, healthcare professionals, and the wider community, we aim to address key issues affecting the Down syndrome community. Our advocacy focuses on education, health, employment, and housing and social care, ensuring that every individual with Down syndrome has the opportunity to lead a fulfilling life.

Our Work

  • Advocacy and Policy Change: We work tirelessly to advocate for laws and policies that promote the rights, dignity, and potential of individuals with Down syndrome. Our group plays a pivotal role in legislative efforts, ensuring the voices of those we serve are heard loud and clear- right to the top of government.
  • Community Engagement: Through workshops, seminars, and public awareness campaigns, we engage with communities to foster a deeper understanding of Down syndrome. Our goal is to break down barriers, challenge misconceptions, and celebrate all achievements of individuals with Down syndrome- regardless of their level of learning disability..
  • Support and Resources:  From navigating healthcare and education systems to accessing employment and independent living support, we want to hear about what worked and what didn’t work for you.
  • Research and Development: Collaboration with academic and research institutions must stay at the forefront of Down syndrome research. This knowledge fuels our advocacy, ensuring it is evidence-based and impactful. We hold power to account and ensure they understand the unique needs of people with Down syndrome- straight from the people with Down syndrome.


Stay Connected

Stay up-to-date with our latest initiatives, events, and advocacy work by signing up for our newsletter. Follow us on social media to become part of a community that’s dedicated to positive change and inclusion for individuals with Down syndrome.

Join our Advisory Group of adults with Down syndrome.

Through online meetings led by our facilitators with Down syndrome: Florence, Ed, Heidi, James and me, we plan to

  • share information on the Down Syndrome Act and what we are doing to make it law
  • hear and record the opinions of those living with Down syndrome
  • facilitate discussions about issues important to participants and how to make change

We’ll be documenting and sharing what we learn as reports, so that all our perspectives can shape policy.

To register, please complete the Consent Form online (button below) or get in touch

All adults with Down syndrome are welcome, and can attend with or without a supporter. We recognise that group Zoom meetings are not an accessible means of participation for all people, and we can offer individualised meetings with anyone for whom these are not a suitable way to contribute. Get in touch to explore this with us.

More information is included in the documents linked below. If you have any further questions, contact us at


national down syndrome

The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives. 

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