Global Down Syndrome Foundation, Centro UC Síndrome de Down and Japan Down Syndrome Association Join Forces to Translate & Provide Online Access to the GLOBAL Adult Guideline
DENVER, Dec. 29, 2022 (GLOBE NEWSWIRE) — Today, Global Down Syndrome Foundation (GLOBAL), published a Spanish and Japanese version of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (“GLOBAL Adult Guideline”) in collaboration with the El Centro de la Universidad Católica de Síndrome de Down in Chile (Centro UC Síndrome de Down or CUSD) and the Japan Down Syndrome Association (JDSA).
The GLOBAL Adult Guideline is the first evidence-based guideline for adults with Down syndrome and was published in English in JAMA, the Journal of American Medical Association, in 2020. The guideline authors include the directors of the largest adult Down syndrome clinics in the US, and the current nine medical topics are: behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. GLOBAL is working to expand the topics to include sleep apnea, solid tumors, leukemia, vision/eye care, and physical therapy and fitness.
In addition to the 80-page guideline for medical professionals, GLOBAL has also published a much shorter family-friendly version, and toolkits that include easy to follow assessments for Celiac disease, Diabetes, Behavior, and annual check-ups.
All of these resources for adults are now available in Spanish and Japanese at no cost on the GLOBAL website, DS-Connect®: The Down Syndrome Registry, CUSD website, and JDSA website.
“GLOBAL is pleased to be able to reach Spanish and Japanese speakers who have Down syndrome and their families in the U.S. in collaboration from the National Institutes of Health/DS-Connect®,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “The NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development has been supportive from the beginning. We are also deeply grateful for Dr. Macarena Lizama at CUSD and Dr. Hiroshi Tamai, President of JDSA, Dr. Chisen Takeuchi of the JDSA for helping to ensure this reaches hundreds of thousands of Spanish and Japanese speakers around the world.”
GLOBAL has worked with Congress since 2006 advocating for a trans-NIH Down syndrome research funding program and for increased funding. In December of 2010, GLOBAL and the NIH co-organized the first Down syndrome research conference with a focus on registries and biobanks. One important result was the establishment of DS-Connect®: The Down Syndrome Registry.
“It is so important for me and other people with Down syndrome to have this in Spanish,” says Yadiro Carrillo, a 32-year-old self-advocate and entrepreneur who happens to have Down syndrome. “I need to know how to take care of myself as an adult!”
“Seeing the guideline in Spanish feels like GLOBAL values Spanish -speaking families like mine,” said Yadira Carrillo, mother of a 32-year-old daughter who has Down syndrome. “Language is a barrier some families face to receiving medical care and I know this will help so many people in the U.S. and internationally.” In Chile, GLOBAL has been working closely with Dr. Lizama on many projects including creating the Spanish version of the GLOBAL Guideline and the COVID-19 and Down Syndrome Resource.
“What Michelle, Bryn Gelaro and their team have accomplished in research and medical care is so important,” says Dr. Macarena Lizama, Medical Director of the El Centro de la Universidad Católica de Síndrome de Down in Chile. “We are honored to collaborate with GLOBAL on this transformative resource and to improve medical equity, especially for Spanish-speaking countries where medical care access and basic resources for people with Down syndrome can be very scarce. I will be very proud to use this resource in my clinic and share it with my colleagues and families.”
Dr. Hiroshi Tamai echoes this sentiment, “We are grateful for the collaboration we have had with GLOBAL and to have this important resource in Japanese is a dream come true. My daughter and thousands of Japanese adults with Down syndrome will surely benefit. We look forward to working with GLOBAL and adding new medical areas in the next few years.”
GLOBAL is currently working with the Ministries of Health in both Chile and Japan to ensure the guidelines are available free of charge and easily findable on their disability home pages.
To learn more about the GLOBAL Adult Guideline and download your copy today, visit www.globaldownsyndrome.org/
To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org
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 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, 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 & Newborn Down Syndrome Information 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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