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're turning awareness into action to support patients and advance research.
“Today, I am living in remission because researchers kept asking questions, physicians kept learning, patients shared information, and new treatment possibilities emerged.”
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 →
Building toward breakthroughs
in VEXAS research
We're working to advance research into VEXAS — supporting the search for better treatments and, ultimately, a cure. As research funding decisions are finalized, we'll share updates here on the studies and investigators we support.
View all research & clinical studiesA key research priority is understanding the genetic underpinnings of VEXAS and identifying potential treatment pathways to improve patient outcomes.
Learn moreBuilding a global database of VEXAS patients could accelerate discovery, standardize diagnostic criteria, and connect patients to specialist care centers worldwide.
Learn moreWe're working toward funding significant VEXAS research grants, with details expected later in 2026. Researchers interested in future opportunities are welcome to contact us.
Contact us
The people behind
the foundation
VEXAS champion and administrator, VEXAS Support Facebook Group
VEXAS champion
National Trustee, Foundation Fighting Blindness
VEXAS patient
We're finalizing our Medical Advisory Council — a group of clinicians and researchers with direct expertise in VEXAS who will help guide our research priorities and patient resources. Check back soon to meet them.
News & research highlights
Your support turns
awareness into action
The VEXAS Foundation is turning awareness into action — supporting people affected by VEXAS, advancing research, and working toward a better future for everyone impacted by this disease. Your gift helps fund awareness, education, and patient support programs, and builds toward the research funding we're working to launch.
An independent community where warriors (people living with VEXAS), champions (caregivers), and family members share experiences, ask questions, and navigate the journey together.
Connect with the VEXAS Support Community
VEXAS can feel isolating, especially when you're newly diagnosed or trying to find answers. The independent VEXAS Support Facebook Group brings together warriors (people living with VEXAS), champions (caregivers), and family members from around the world to share experiences, learn from one another, and connect with people who understand the journey.
“My father’s VEXAS diagnosis came four days after he passed away. At the time, there were so few answers and so few people who even knew what VEXAS was. His journey inspired me to create the VEXAS Support Group, so others searching for answers would have a place to find information, share experiences and connect with people who understand.”
Jen McCarron · Founder, VEXAS Support Group