Supporting patients.
Advancing research.
Changing the future of VEXAS.
VEXAS syndrome affects thousands — most go years without a diagnosis. You are not alone, and there is hope. We fund the science that changes that.
After three years of unexplained fevers and being told nothing was wrong, I finally had an answer. Finding this foundation was the first time I felt like someone truly understood what I was going through.
What is VEXAS syndrome?
VEXAS is a recently discovered autoinflammatory disease caused by a somatic mutation in the UBA1 gene. It primarily affects men over 50 and is frequently misdiagnosed for years — but a blood test can now confirm it.
A rare autoinflammatory disease caused by an acquired UBA1 gene mutation — not inherited. First described by Dr. David Beck and Dr. Peter Grayson at the NIH and published in the New England Journal of Medicine in 2020.
Primarily men over 50. Estimated 15,500 patients in the US — more prevalent than many well-known inflammatory conditions, yet still widely unrecognized by physicians.
Ask your rheumatologist or hematologist about UBA1 genetic testing, which is usually performed on a blood sample. If results are inconclusive but VEXAS is still suspected, additional testing may be recommended.
The scale of VEXAS
VEXAS was only identified in 2020. The research pipeline is young, underfunded, and critically dependent on philanthropic support.
affected in the US
living with VEXAS
to correct diagnosis
was first identified
Statistics sourced from peer-reviewed literature and NIH estimates. View published studies →
The people behind
the foundation
Our Medical Advisory Council brings together hematologists, rheumatologists, and geneticists with direct expertise in VEXAS. Their guidance shapes our research priorities and ensures our patient resources are clinically accurate.
Funding the science
that saves lives
We award grants to leading investigators focused on understanding VEXAS, improving treatments, and ultimately finding a cure. Every dollar funds research that directly benefits patients.
View all research & clinical studiesInvestigating the genetic underpinnings of VEXAS and identifying novel treatment pathways, including JAK inhibitors and azacitidine, to improve patient outcomes.
Read research summaryBuilding a global database of VEXAS patients to accelerate discovery, standardize diagnostic criteria, and connect patients to specialist care centers worldwide.
Learn moreWe fund innovative ideas that advance proven approaches and pursue novel solutions to improve patient outcomes. Estimated grant range $30K–$50K. Contact us for full criteria.
View grant criteriaNews & research highlights
Your donation funds
real change
Every contribution goes directly toward research grants, patient support, and awareness programs that change outcomes for VEXAS patients worldwide. Here's exactly where your money goes.
A supportive community for VEXAS patients, caregivers, and families to share experiences, ask questions, and navigate the journey together.
Connect with fellow patients and caregivers.
VEXAS can feel isolating — especially before diagnosis. Our patient community is one of the most active VEXAS spaces anywhere, filled with people who understand exactly what you're going through.