Understanding, hope, and answers for X‑linked conditions.
We fund the science, stand beside families, and turn research into everyday support for people living with X‑linked intellectual disabilities.
Trusted by 6,400+ families and 120 research partners worldwide.
Wherever you're starting from, we'll point you the right way
I'm a family or carer
Guides, peer support, and services for daily life after a diagnosis.
Get support →I was just diagnosed
Plain-language answers about X-linked conditions and what comes next.
Start here →I'm a researcher
Grant opportunities, our patient registry, and collaboration tools.
Explore research →I want to help
Donate, fundraise, volunteer, or advocate in your community.
Get involved →Four ways we move families forward
Every program is built with families and clinicians, so progress in the lab reaches the kitchen table.
Fund research
We back gene discovery, clinical trials, and therapies with the greatest potential to change lives.
Support families
Free guides, a warm helpline, and peer groups that meet families exactly where they are.
Raise awareness
We push for earlier diagnosis, better policy, and a world that includes every ability.
Share knowledge
Clear, trustworthy medical and educational resources — reviewed by experts and families.
Momentum you can measure
What are X‑linked intellectual disabilities?
X‑linked intellectual disabilities are a group of conditions caused by changes in genes on the X chromosome. They affect learning, thinking, and daily living — and they touch every family differently.
We explain it in plain language: what it means, how it's diagnosed, and where to find help — no medical degree required.
News & family stories
A gene therapy we funded just entered its first human trial
After a decade of lab work, a treatment targeting one of the most common X-linked genes has reached the clinic for the first time.“The helpline answered on the hardest night”
One parent shares what it meant to reach a real person at 2am, three days after their son's diagnosis.What the new newborn screening bill means
A plain-language guide to the legislation that could bring earlier diagnosis to thousands of families.Your gift turns research into real support.
Every dollar is split between the science of tomorrow and the families who need help today.