North Carolina Down Syndrome Alliance (NCDSA) is your first call for resources, support, and your connection to the North Carolina Down syndrome community. Contact NCDSA at (984)200-1193 or info@ncdsalliance.org.

NCDSA is here for you!

NCDSA is committed to serving people with Down syndrome, their families, and healthcare professionals. NCDSA works to improve healthcare outcomes and quality of life for people with Down syndrome and their families by providing accurate, balanced, and up-to-date information. The information is available in print and download and is designed to further educate yourself about Down syndrome across the lifespan.

General Information

• NCDSA Brochure English and Spanish
• Myths and Truths about Down Syndrome English and Spanish
• Down Syndrome Facts English and Spanish
• Preferred Language Guide English and Spanish

New and Expectant Parents

Every Baby Deserves a Joyful Welcome

With that joyful welcome, NCDSA provides accurate, up-to-date, and balanced information about Down syndrome. Information families need to make informed decisions about the health and wellbeing of their child with Down syndrome.

• NC First Call Program New and Expectant Parent Program Brochure English and Spanish

NCDSA provides support to new and expectant parents through the North Carolina First Call Program. Resources include Prenatal Information Packet, Welcome Baby Bag, Connection with Trained Parent Mentors, and more. All services are free and confidential.

Across the Lifespan

The life expectancy of a person with Down syndrome has increased significantly over the past several decades. People with Down syndrome are reaching milestones of growing adolescents, maturing adults, and aging seniors – many living into their 60’s. Health related issues regarding a person with Down syndrome change over time. NCDSA is committed to providing people with Down syndrome, their families, and caregivers the tools they need to ensure the healthcare outcomes and quality of life of people with Down syndrome is consistently met over the course of their lives.

• DSMIG-USA® is a group of health professionals committed to promoting the optimal health care and wellness of individuals with DS across the lifespan. Members of this DSMIG-USA® are professionals from a variety of disciplines who provide care to individuals with Down syndrome and/or their families.
• DSMIG-USA® Project ECHO is a monthly virtual meeting for health care providers to learn and share information about the care of people with Down syndrome.
• DS-Connect® is a powerful resource where people with Down syndrome and their families can:
  • Connect with researchers and health care providers.
  • Express interest in participating in certain clinical studies on Down syndrome, including studies of new medications and other treatments.
  • Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with Down syndrome across their lifespans.

Children and Adolescents

• The Centers for Disease Control (CDC) provides growth charts for children with Down syndrome in the United States. These charts can help healthcare providers monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.
• American Academy of Pediatrics Health Care Information for Families of Children with Down Syndrome
• Down Syndrome Healthcare Guidelines (2011 Revision) Record Sheet English and Spanish
• American Academy of Pediatrics Clinical Report Health Supervision for Children and Adolescents with Down Syndrome
• American Academy of Pediatrics Supplemental Information Summary of Down syndrome-specific care
• North Carolina – Psychiatry Access Line (NC-PAL) is a free telephone consultation and education program to help health care providers address the behavioral health needs of pediatric and perinatal patients.

Adults

• JAMA Medical Care of Adults With Down Syndrome A Clinical Guideline
• Global Medical Care Guidelines for Adults with Down Syndrome for clinicians as well as family friendly guides in English and Spanish
• Global Psychosocial Assessment Overview & Common Presentation Checklist
• Global Medical Care Guidelines for Adults with Down Syndrome Checklist
• Global Celiac Disease: Signs and Symptoms Checklist
• Global Guideline Diabetes Toolkit
• The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) addresses the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and other causes of dementia. NTG produces materials including practice guidelines, screening tools, education curricular, and training workshops.

Foreign Language Translation

Please contact NCDSA directly for resources in other languages for your patients and their families.

NCDSA is your first call for resources, support, and your connection to the North Carolina Down syndrome community. Contact NCDSA at (984)200-1193 or info@ncdsalliance.org.