GLOBAL Family-Friendly Guideline

Global Down Syndrome Foundation Publishes Family-Friendly Version of GLOBAL Medical Care Guidelines for Adults with Down Syndrome

This important new resource is available online and in print along with family-friendly toolkits that help adults with Down syndrome receive updated care from medical providers

Denver – June 23, 2022 – Today, Global Down Syndrome Foundation (GLOBAL) announced the publication of a family-friendly version of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline).  The resource is a professional rewrite aimed at accessibility, with focus group input from individuals with Down syndrome and their family members. Focus group contributors were selected to include gender, racial, and age diversity.

The GLOBAL Adult Guideline was published in JAMA, the Journal of American Medical Association, in October 2020 and was the culmination of five years of hard work led by GLOBAL and the medical directors of the largest adult Down syndrome clinics in the United States. Written for medical providers, it is a technical document that covers nine areas – behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. 

“We created the guidelines following the highest standards so that we could be published in JAMA,” says Michelle Sie Whitten, President & CEO of GLOBAL. “Every English-reading practitioner can find and implement the guidelines, which is such a gift to our community. Today, we are taking it to the next level and empowering adults with Down syndrome and their families to understand the guidelines and to advocate for them with their medical providers.  As a parent of a 19-year-old with Down syndrome, it is dream come true.”

The Family-Friendly GLOBAL Adult Guideline has helpful pull-out quotes, large photos and font, and is color coded by medical topic. The written copy is approximately 20 pages, compared to the technical version, which is over 80 pages. The Family-Friendly GLOBAL Adult Guideline can be accessed free of charge on the GLOBAL website and in print form. It is anticipated that the print version will be ordered by medical centers, Down syndrome organizations, and other advocacy groups.

Other important resources for families include the GLOBAL Guideline Toolkits, which are also available online. GLOBAL is currently in the second year of its next five-year plan to update the GLOBAL Adult Guideline to include new medical areas including sleep apnea, blood cancers, solid tumor cancers, vision and eye issues, and physical therapy and fitness.

To learn more about the GLOBAL Guideline, visit www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome World TM . GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

Important Notice

While content of this press release and the GLOBAL Guideline was developed by GLOBAL and the GLOBAL Guideline Authors, we are unable and do not intend to provide medical advice or legal advice to individuals. Please contact your health care provider(s) or legal advisor(s) for questions specific to your individual health history or care.

Press Contacts          

Anca Call                                            
acall@globaldownsyndrome.org       
720-320-3832

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