About CARE Down Syndrome

Designed for Primary Care. Backed by Expertise.

Whether you're seeing one adult with Down syndrome or many, CARE Down Syndrome gives you the knowledge and resources to deliver informed, respectful, and individualized care starting today.

Why CARE Down Syndrome

As a healthcare professional, you’re dedicated to delivering informed, compassionate care. Yet when it comes to adult patients with Down syndrome, many professionals lack access to the specialized knowledge needed to navigate complex, co-occurring health conditions and evolving clinical guidelines.

According to a survey from the National Down Syndrome Society (NDSS), the greatest concern among adults with Down syndrome and their caregivers is the limited access to healthcare professionals trained in their unique medical needs. Only an estimated 5% of adults with Down syndrome in the U.S. have access to specialty Down syndrome clinics. That means 95% rely on you, their primary care professional.



To address this gap, NDSS created CARE (Clinical Awareness, Resources, and Education) Down Syndrome, a comprehensive initiative designed to equip healthcare professionals with tools that improve care, increase diagnostic confidence, and support better health outcomes for adults with Down syndrome.

What You’ll Find

Self-Paced eLearning Course

Earn continuing medical education (CME) credits while advancing your expertise in caring for adults with Down syndrome. Learn practical, evidence-based strategies for managing common health conditions, supporting healthy aging, and improving overall quality of life.

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Reference Articles

Explore clinically relevant articles and tools covering key topics including Alzheimer’s disease, Down Syndrome Regression Disorder, and mental health. Earn CME credits for each reference article reviewed by validating your participation within NDSS’ learning platform.

View Reference Articles

Resource Library

Access downloadable patient education materials and additional tools designed to support healthcare professionals in delivering exceptional care to adults with Down syndrome.

View Resource Library

Authors and Reviewers

The CARE Down Syndrome initiative was made possible thanks to the collaboration of a dedicated group of contributors and healthcare professionals.

Brian Chicoine, MD

Lead Author and Reviewer

Brian Chicoine, MD, is the medical director of the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois. He is on the faculty of the Family Medicine residency at Advocate Lutheran General Hospital. He received his medical degree from Loyola University of Chicago Stritch School of Medicine and completed his Family Medicine residency at Lutheran General Hospital. In 1992, Dr. Chicoine co-founded the Adult Down Syndrome Center, which has served and documented the health and psychosocial needs of over 6000 adolescents and adults with Down syndrome since its inception. Dr. Chicoine has provided medical care for adults with intellectual disabilities for over 35 years and has presented and written extensively on caring for adults with Down syndrome.

Founding Partner

CARE Down Syndrome would not be possible without the generous contributions of the Linda and Mike Mussallem Foundation.

Partners

Through collaboration with our partners, we’re advancing knowledge, access, and quality of care for people with Down syndrome.

Supporters

CARE Down Syndrome has been reviewed and endorsed by the Down Syndrome Medical Interest Group-USA (DSMIG-USA) and the American Academy of Developmental Medicine & Dentistry (AADMD).

FAQ

Only an estimated 5% of adults with Down syndrome have access to a specialty clinic in the United States. The National Down Syndrome Society (NDSS) created the CARE (Clinical Awareness, Resources, and Education) Down Syndrome initiative to address this critical gap in healthcare for adults with Down syndrome. In 2023, an NDSS survey found that many adults with Down syndrome and their caregivers struggle to find clinicians who understand their unique medical needs. CARE Down Syndrome offers a central website with a self-paced eLearning course, peer-reviewed reference articles, and a comprehensive library of resources to help healthcare professionals provide informed, respectful, and effective care. The initiative’s goal is to improve healthcare quality for the adult Down syndrome community.

CARE Down Syndrome is designed for primary care professionals who support adults with Down syndrome, including family physicians, internists, nurse practitioners, and physician assistants. Medical residents are also encouraged to explore our learning opportunities and resources.

You can earn free CME credits by completing our main two-hour CARE Down Syndrome eLearning Course or any of our 17 topic-specific reference article courses. Each learning opportunity offers CME credit, so you can earn even more by exploring multiple topics!

To get started, click the Register button at the top of your screen to access the content through our learning management system.

Be sure to complete the evaluation after each course to receive credit and validate your participation.

  • If you’re a healthcare professional, you can support CARE Down Syndrome by sharing the course with colleagues, integrating it into relevant training programs, or making a donation to help expand access and develop future content. For partnership or sponsorship opportunities, please reach out to us directly.
  • If you’re a parent, caregiver, or individual with Down syndrome, we invite you to share CARE Down Syndrome with the doctors and healthcare professionals in your network. You can also support the growth of this important resource by making a donation to help expand training and tools for healthcare professionals.
  • For partnership and sponsorship opportunities, please email careds@ndss.org.

Yes! CARE Down Syndrome is a growing clinical education and resource hub. New content will be updated and added to reflect the latest research, address emerging topics, and respond to the needs of healthcare professionals and the Down syndrome community. Sign up for our newsletter to stay up to date.