Denver, Itasca, IL, Nov. 12, 2024 (GLOBE NEWSWIRE) -- Global Down Syndrome Foundation (GLOBAL), the leading Down syndrome research, medical care and advocacy non-profit in the U.S., and the American Academy of Pediatrics (AAP), an organization of 67,000 pediatricians, are joining forces to ensure that the Academy’s recommendations for health care for children and adolescents with Down syndrome are available in multiple languages and provided digitally at no cost around the world.
As part of this collaboration, the AAP recommendations have been translated into Spanish, Italian, Swahili, and Albanian. All of the translations are available at no cost on the AAP and GLOBAL websites as well as through in-country collaborators including: Centro UC Síndrome de Down, Policlinico Universitario Agostino Gemelli IRCCS, Chadron’s Hope Foundation, Down Syndrome Albania, and Down Syndrome Kosova. GLOBAL’s translation work is in part funded by the following donors: The Stephens Family, The Napoleone Family, and Charles Monfort.
“We are pleased to collaborate with the Global Down Syndrome Foundation to provide this important resource to people in the U.S. who are English language learners and to those who are culturally and linguistically diverse,” said Debra Waldron, MD, MPH, FAAP, Senior Vice President, Healthy Resilient Children, Youth & Families at the AAP. “The Academy’s mission is dedicated to the health of all infants, children and adolescents, and this project will improve access to evidence-based recommendations to help all children thrive.”
“GLOBAL and our families are so grateful to the AAP for creating and updating these transformative pediatric guidelines,” says Michelle Sie Whitten, Global Down Syndrome Foundation President & CEO. “It is important for our families to know that our children need annual check-ups with specific screenings and assessments that typical children may not need and what to look out for. Our Vice President of Research & Medical Care, Bryn Gelaro, and the amazing team at the AAP are working hard to make sure children with Down syndrome can reach their potential starting with good health.”
The AAP clinical report, Health Supervision for Children and Adolescents with Down Syndrome, was updated in April 2022. The updates include an expanded section on eye conditions (e.g. glaucoma and keratoconus), autoimmune conditions, feeding and respiratory conditions, and information for communicating a diagnosis with a family. Other changes include recognition of an increased prevalence for autism spectrum disorder (7-19% up from 1%), emphasis on associated behavioral health conditions, and special considerations for use of psychiatric medications in individuals with Down syndrome. A family-friendly interpretation of the recommendations is available on HealthyChildren.org, the Academy’s website for parents and caregivers.
GLOBAL is working with professional medical translators in the U.S. and in-country Down syndrome medical organizations and professionals to ensure that the translations are accurate, and that the family-friendly version is easy to read. The following languages and collaborators are being lined up for 2025 and 2026: Ukrainian with Ukrainian Down Syndrome Organization, and Portuguese, Hindi and Chinese with collaborators yet to be identified.
There are an estimated 400,000 people with Down syndrome living in the U.S. and over 6 million worldwide. In the U.S. live births have increased from 1 in 1,000 in 2000 to 1 in 691. In addition, the lifespan of people with Down syndrome has increased from 28 years old in the 1980s to 60 years old today. Despite the increase in population, there are only 12 specialty clinics for adults Down syndrome in the U.S. Increasing translational research, creating more free and accessible health guidelines, and the immune system, obstructive sleep apnea and regression have been identified by the NIH INCLUDE Project as key to improving health outcomes for children and adults with Down syndrome.
To Access the AAP Health Supervision for Children and Adolescents with Down Syndrome for Clinicians in English, visit https://publications.aap.org/pediatrics/article/149/5/e2022057010/186778/Health-Supervision-for-Children-and-Adolescents?autologincheck=redirected
To Access the AAP Health Supervision for Children and Adolescents with Down Syndrome for Families in English, visit https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/children-with-down-syndrome-health-care-information-for-families.aspx
To Access the AAP Health Supervision for Children and Adolescents with Down Syndrome for Clinicians and/or Families in Other Languages, visit https://www.globaldownsyndrome.org/aap-health-supervision-translations
To learn more about GLOBAL Medical Care Guidelines for Adults with Down Syndrome, visit https://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 established the first Down syndrome research institute and supports over 400 scientists and over 2,500 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 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.
GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, and LinkedIn.
About American Academy of Pediatrics
The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists whose mission is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. For frequent updates on AAP recommendations, Pediatrics studies, AAP in the news, public awareness campaigns, information for parents and more, follow us on social media @AmerAcadPeds.
Attachments
- Photo courtesy of the Global Down Syndrome Foundation
- Photo courtesy of the Global Down Syndrome Foundation
Anca Call Global Down Syndrome Foundation (720) 320-3832 anca.consultant@globaldownsyndrome.org Lisa Robinson American Academy of Pediatrics 630-626-6084 lrobinson@aap.org
