Although Down syndrome is one of the most common genetic conditions, the international community has built a rich network of specialised organisations that provide support, knowledge, and research for individuals, their families, and professionals. Below are the most important of these resources and what each visitor can gain from them.
National Down Syndrome Society — NDSS
Website: ndss.org
Founded in 1979, NDSS is one of the largest American organisations in this field. It works across three pillars: policy advocacy, resource provision, and changing societal perceptions of people with Down syndrome.
What users can benefit from:
- A direct helpline for newly diagnosed families covering education, health, and employment
- The free "A Promising Future Together" new parent guide
- Free webinars covering a wide range of topics
- The CARE DS platform for healthcare professionals supporting adults with Down syndrome
- Advocacy tools for local, state, and federal action
National Down Syndrome Congress — NDSC
Website: ndsccenter.org
Founded in 1973, NDSC is the most comprehensive national reference from the moment of prenatal diagnosis through to adulthood. Its network spans all fifty states.
What users can benefit from:
- A free helpline to answer any query and connect callers to local resources
- The world's largest annual convention for individuals with Down syndrome, families, and professionals
- DS-Connect: a national registry enabling participation in scientific research
- A monthly newsletter with the latest news, research, and events
- Grants for families with a child aged 3 years or younger
Woodbine House — Specialist Publisher
Website: woodbinehouse.com
A specialist publisher founded in 1985 by the father of a child with Down syndrome. It focused on practical and evidence-based books about childhood disabilities.
What users can benefit from:
- Practical books on early intervention, communication skills, mental health in adults, and inclusive education
- "The Guide to Good Health for Teens and Adults with Down Syndrome"
- Comprehensive references for teachers and therapists on teaching strategies
Note: Woodbine House has announced the closure of its operations, though its books remain available through online libraries and Amazon.
Global Down Syndrome Foundation
Website: globaldownsyndrome.org
Founded in 2008, GLOBAL is distinguished by its direct connection to the Linda Crnic Institute — the first comprehensive academic centre for Down syndrome research in the United States.
What users can benefit from:
- Evidence-based medical guidelines for adults (published in JAMA) covering mental health, dementia, diabetes, heart conditions, and thyroid disorders
- "Down Syndrome World" magazine with scientific, educational, and inspirational content
- The latest research on Alzheimer's, heart conditions, and autism
- A comprehensive directory of specialist organisations and clinics worldwide
- Educational grants for local organisations
Down Syndrome International — DSi
Website: ds-int.org
Founded in 1993, DSi brings together more than 150 national member organisations. It is the first international body dedicated to the rights of people with Down syndrome.
What users can benefit from:
- International education guidelines available in multiple languages including Arabic
- Inclusive organisation principles available in Arabic
- The World Down Syndrome Congress (next edition in Argentina, 2027)
- Human rights advocacy resources and tools for implementing the UN CRPD
- World Down Syndrome Day campaigns and materials (21 March)
Down Syndrome Education International — DSE
Website: down-syndrome.org
A British research and educational organisation specialising in learning and cognitive development in people with Down syndrome, working to translate scientific research into practical classroom strategies.
What users can benefit from:
- Down Syndrome Education Online: detailed guides for parents and teachers on reading, writing, maths, and language development
- In-depth research on memory, language, reading, and cognitive development
- Practical educational guidance for specialist practitioners worldwide
- The peer-reviewed "Down Syndrome Research and Practice" journal
Haring Center for Inclusive Education — University of Washington
Website: haringcenter.org
A research and educational centre at the University of Washington, founded by Professor Norris Haring and his wife Dorothy. The centre played a historically pivotal role in demonstrating that children with Down syndrome can read and learn.
What users can benefit from:
- Professional training programmes for teachers using the research-based "Building Blocks" curriculum
- Learning Hub: a digital platform of training resources for professionals
- Online training in inclusive education and Universal Design for Learning (UDL)
- Early development research on infants with Down syndrome (0–12 months)
- An inclusive classroom model bringing together children with disabilities and their peers
