ATRX Research Alliance is a global community dedicated to improving the quality of life of those affected by ATR-X syndrome and accelerating research to find treatment.
SUPPORT THE CAUSE
NEWLY DIAGNOSED
Meet Benjamin
Benjamin was born in June, 2017, nearly a month early. He struggled with feeding early on, and at the 6 month mark his doctor identified that he was missing his milestones. At 9 months he was referred to early intervention services, and he has been in therapies ever since. At 2 years old, after much searching, the source of Benjamin’s struggles was identified as ATR-X Syndrome. Even with all his struggles, he’s a happy little boy, and very loving toward his siblings and family. Benjamin just started schooling at the local school for the blind, and his teachers say they have never seen a child smile as much as he does.
Our Warriors
Meet some of the warriors battling ATR-X syndrome.
They are the bravest, strongest and happiest people we know.
From the blog
In honor of Rare Disease Day, February 28th, 2023, Please Support This Film
In honor of Rare Disease Day, February 28th, 2023, The "Too Rare To Care" team is launching their documentary film trailer, "RARE." This is a wonderful film that can be leveraged in so many ways to help the Rare Disease community fight for change. Learn about the...
We have a lot planned for 2023, and are excited to have you on this journey with us.
Hello everyone, we hope everyone had a wonderful and safe Halloween! As we enjoy this fall season and enter into the holiday months, a spirit of gratitude fills the air. We recently sent out this newsletter to our donors to thank them for their support, and share...
Two Leading Rare Disease Organizations Join Forces to Enable and Accelerate Patient-Led Engagement and Advance Research
AMAZING NEWS for the rare disease community! We are thankful to those who helped make this merger happen, and we are excited for the progress that will result from this alliance. #raredisease #improvingqualityoflife #acceleratingresearch #ARA...
Menkes Disease Treatment on the Horizon, After Nearly Three Decades
Hats off to these pioneers for their work to improve the lives of their patient community!!! https://dnascience.plos.org/2021/11/18/menkes-disease-treatment-on-the-horizon-after-nearly-three-decades/
