What is Down syndrome? Symptoms, causes, diagnosis and treatment
Preferred organizations for essential Down syndrome information
National Association for Down Syndrome
America’s oldest organization for people with Down’s syndrome and their families, NADS began in 1961 when a group of Chicago parents defied medical advice and raised their children with Down’s syndrome at home. Today, NADS offers parent support, self-advocacy programs for people with Down’s syndrome and, before the COVID-19 pandemic, retreats, conferences and seminars. One inspiring feature is a video featuring self-advocates called I love my life.
National Down Syndrome Society
The NDSS describes itself as “the premier human rights organization for all people with Down syndrome”. The group’s resource-rich website includes advice on everything from understanding what a diagnosis of Down’s syndrome means to how to find employment opportunities for people with Down’s Syndrome. One notable offering: the NDSS DS-Ambassador Program, which seeks to have an Ambassador with Down’s Syndrome in each United States Congressional District with the goal of building relationships with elected government officials and promoting measures that help the Down’s Syndrome community. .
Down Syndrome Research Foundation
This Canadian website features news, research updates, well-written and beautifully photographed articles about people of all ages with Down syndrome, and more. The foundation’s mission is to empower people with Down syndrome to reach their full potential. A strong point is the online magazine, 3.21: The Canadian Down’s Syndrome Magazine, published jointly by the Foundation and the Canadian Down Syndrome Society.
This US government website from the National Library of Medicine provides a wealth of user-friendly information on the effects of genetics on human health. There is smart, easy-to-understand information on over 1,300 genetic diseases, including Down syndrome, as well as basic information like a helpful guide called Help Me Understand Genetics, which makes it a must-have guide. in this important and constantly evolving field.
World Down Syndrome Foundation
Established in 2009, the non-profit Global Down Syndrome Foundation is dedicated to dramatically improving the lives of people with Down syndrome through research, medical care, education and advocacy. The website takes an in-depth look at important issues, including adult health care for people with Down syndrome and the medical disparities faced by people with the condition. Handy resources include an interactive location map to find a Down syndrome healthcare clinic near you.
Favorite Personal Blogs About Living With Down Syndrome
Baby lemonade blog
This captivating blog chronicles the journey of a family with their beloved daughter Kara, aka “Baby Lemonade”, who has Down syndrome. It also includes guest posts and resources. “My intention to share our journey is to provide a glimpse of what it REALLY feels like raising my daughter with Down syndrome,” writes the blog’s author. “From there, I want to see the acceptance and awareness. I want to show society that a person is VALUE regardless of the number of chromosomes they have. A memorable article: My 4 year old daughter with Down’s syndrome, celebrating Kara’s birthday.
Enthusiastic, down-to-earth and straightforward, this blog from the father of a son with Down’s syndrome is upbeat and insightful. He also gained a large and supportive fan community. One particularly useful article provides advice for friends and family of future parents of a child with Down syndrome. What to tell someone diagnosed with Down’s syndrome includes advice from 300 people who follow Noah’s Dad on Facebook.
Additional reports by Sari Harrar.