National Down Syndrome Society @NDSS
NDSS is creating a world where individuals with Down syndrome thrive. ndss.org Washington, D.C. Joined May 2010-
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We encourage anyone looking for more information on Down syndrome across the lifespan to visit ndss.org/lifespan/under… or utilize our helpline at 800-221-4602 and info-box at [email protected].
We, alongside other advocacy organizations, are working to improve the way that diagnoses are delivered, which includes healthcare professionals providing accurate, evidence-based information in a sensitive and informed way.
When receiving a Down syndrome diagnosis, 61% of parents reported experiencing negative bias about Down syndrome from medical providers, while fewer than 40% said they received accurate, current, and balanced information from their doctor.
We attended the In Motion, In Community: Wellness for People with IDD/A and their Supporters! With support from the @eaglesautism Community Grant Award, the @TJUHospital FAB Center for Complex Care launched their wellness initiative & gave each attendee an NDSS 321go! Fitness Kit
The deadline to submit a photo for the 2026 NDSS Times Square Video Presentation is June 4! Submit at pci.jotform.com/form/260194472…
On Tuesday, June 2 at 10 AM ET, NDSS is hosting a meeting with the U.S. Food and Drug Administration (FDA) to discuss Down syndrome-associated Alzheimer's disease (DS-AD). Get meeting details and learn how you can make an impact during this meeting at ndss.org/el-pfdd
NDSS is honored to support self-advocates with Down syndrome in pursuing their goals, whether it’s starting a business, continuing education, or following a personal passion. 🚨 Apply by Friday, May 22 at ndss.org/scholarships.
Photo courtesy of Global Down Syndrome Foundation
We are proud to announce that NDSS will honor Congresswoman @EleanorNorton with the NDSS Lifetime Impact Award on May 13 following our Down Syndrome Advocacy Conference! We are grateful for her years of service advocating for the Down syndrome and broader disability community.
So great to be back with my good buddy Evan Rothholz from Harleysville today! Evan is a 9th grader in the Souderton Area School District, Nationals super fan, and one of the most thoughtful, joyful, and wise people I know. We may never agree on baseball, but when it comes to making a difference, we are always on the same team. Evan is in town for the @NDSS Advocacy Conference, doing what he does best—leading with positivity and purpose. Since we first met in 2017, he has become more than a friend, he is my Chief Advisor in our mission to uplift our Down syndrome and broader disability community. Together, we have championed inclusion, expanded access to education and employment opportunities, and pushed for stronger support, research, and policies that truly change lives. Our focus today was two, deeply connected urgent priorities: the ability to build a secure life and the opportunity to reach one’s full potential. That means modernizing SSI through my bipartisan, bicameral SSI Savings Penalty Elimination Act, so low-income seniors and people with disabilities are no longer punished for saving responsibly or planning for a more secure future. And it means finally fulfilling America’s promise under IDEA. For generations, IDEA has helped open classroom doors for students with disabilities, but Washington has never met its commitment to cover 40% of special education costs. My IDEA Full Funding Act would require steady annual increases until that promise is kept. To our special needs families, educators, and disability community: we are in this together. I will never stop fighting for Evan, families like his, and the brighter future he inspires every single day.
Honored to meet with advocates from @NDSS this afternoon. I will continue fighting to protect special education and advocate legislation to support people with Down syndrome.
Let’s learn from the lived experiences of people with Down syndrome and work to create a more inclusive, equitable, and respectful world. 💙💛
Click the link below to use our action alert to urge your members of Congress to pass the Words Matter Act and the Words Matter for D.C. Courts Acts. #JustEvolve ndss.quorum.us/campaign/15742…
Happy #WorldAutismMonth! On April 15 at 1:00 PM ET, NDSS is hosting a 𝗳𝗿𝗲𝗲 webinar, Navigating an Autism Diagnosis and Services. Sign up at us02web.zoom.us/webinar/regist…
4 years later, Beth's thoughtful approach to education and research continues to empower our patient community to advocate for care that centers their lived experiences. Her work on our Pathways to Parity training program in partnership with the @NDSS has been some her proudest.
March is National Nutrition Awareness Month! 🥗 It's a time to recognize the powerful role food plays in our overall health and well-being, now and in the future. Visit ndss.org/resources/nutr… for our Nutrition & Down Syndrome webpage.
We want to extend a big thank you to @voya for being a proud sponsor of this year's NDSS Gala & Auction! 🙌 Your support helped make an incredible evening possible, and we are grateful for your continued partnership and commitment to the Down syndrome community. 🧡
Today is #WorldDownSyndromeDay. 💙🩷 We're proud to stand #TogetherAgainstLoneliness with our network of 160+ organisations worldwide. Loneliness is a human rights issue. And together, we're working to change that — for every person with Down syndrome, everywhere. 💛
@cincygreghoodin 👏 Happy World Down Syndrome Day! Thank you for your support!!
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