The National Down Syndrome Society (NDSS) is one of the largest and most established American organisations dedicated to Down syndrome, founded in 1979 with the mission of empowering individuals with Down syndrome and their families. It works across three core pillars: policy advocacy, resource provision, and changing societal perceptions. Website: ndss.org
What Families and New Parents Can Benefit From
NDSS provides exceptional support for families who have recently received a Down syndrome diagnosis. Parents can access:
- The New Parent Guide "A Promising Future Together": a free, comprehensive guide sent on request, covering what to do after diagnosis and how to plan for the future
- Direct Helpline: staffed by specialists who answer questions on education, health, employment, and independent living, handling over 2,000 enquiries annually
- Local Organisation Network: more than 300 affiliate organisations across the United States help families connect with their local community
- Support and Networking Groups: communities bringing together families in similar circumstances to share experiences and emotional support
What Healthcare Professionals Can Benefit From
For doctors, therapists, and nurses, NDSS offers:
- CARE DS Platform at careds.org: a free clinical education platform launched in 2025, providing healthcare professionals with the knowledge and tools needed to care for adults with Down syndrome
- Health and Wellness Programme: coordinates with specialist clinics and researchers to improve healthcare standards
- Free Webinars: recorded and live sessions covering the medical, psychological, and educational aspects of Down syndrome
What Teachers and Educators Can Benefit From
- Education Resources: guides on special education rights and how to work effectively with schools and educational authorities
- Employment Programme: information and tools to help students transition from school into the workplace
- Professional Training Webinars: to develop teachers' competencies in supporting learners with Down syndrome
What Advocates Can Benefit From
- Advocacy Toolkits: ready-to-use tools for advocacy at local, state, and federal levels
- Advocacy Day in Washington: an annual event bringing advocates together to speak directly with legislators
- Legislative Alerts: immediate updates on any legislation affecting the Down syndrome community