Founded by families, driven by science
We started at a kitchen table in 2009 and grew into a global community determined to change what an X-linked diagnosis means.
A future where every X-linked condition is understood, treatable, and supported.
We exist to close the gap between discovery and daily life — funding the research that leads to treatments, while making sure no family waits alone for answers.
Family-led
Families shape every program and sit on every committee.
Evidence-first
We back what works and share what we learn, openly.
Inclusive by design
Accessibility and dignity guide everything we make.
Milestones
The beginning
Three families found each other online and started a support fund.
First research grants
We funded our first five discovery projects across three countries.
The registry launches
A secure database connecting families and researchers worldwide.
First therapy in trials
A gene-targeted therapy we helped fund entered its first clinical trial.
The people behind Xara
Dr. Nadia Osei
Chief Executive
James Whitfield
Head of Research
Priya Menon
Family Services
Marcus Lee
Development
of every dollar goes directly to programs
top-rated for transparency & accountability
serving families for over 15 years