Our mission
The VEXAS Foundation's mission is to raise awareness, support the identification of new and effective ways to treat symptoms, and ultimately facilitate the discovery of a cure.
By promoting education, supporting scientific discovery, and amplifying the voices of patients and caregivers, the VEXAS Foundation strives to create meaningful change. Through collaboration with researchers and the broader medical community, we are working to turn understanding into awareness and hope for everyone touched by VEXAS syndrome.
We refer to our resource guide as "VEXAS 101" to signify the fundamental starting point of understanding VEXAS. We hope our resources serve as a foundation upon which further knowledge and understanding can be built — and remind you that you are not alone.
Three pillars of our work
VEXAS is widely unrecognized even among physicians. We produce educational resources for patients, caregivers, and medical professionals — including the VEXAS 101 Resource Guide — to shorten the time to diagnosis.
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.
We amplify the voices of patients and caregivers through our support community, newsletters, and the Patient Experience Survey — building a network that no patient faces alone.
The Patient Experience Survey
In October 2024 the VEXAS Foundation surveyed patients, caregivers, and families to understand the lived experience of VEXAS — from diagnosis to treatment to the questions no one thought to ask. The results shape our research priorities and advocacy work.
The Patient Experience Survey — 2024
A non-scientific survey distributed to patients, caregivers, and families through the VEXAS Foundation contact database, Facebook support group, and LinkedIn. Conducted October 2024.
Board of Directors
The foundation is led by a dedicated board of directors committed to advancing VEXAS research and patient care. Headshots and full bios coming soon.
Medical Advisory Council
Guided by hematologists, rheumatologists, and geneticists with direct VEXAS expertise. Their guidance shapes our research priorities and ensures our patient resources are clinically accurate.
Transparency & financials
We are committed to full financial transparency. 72% of every dollar raised goes directly to research grants and patient programs.
Annual Report
Our annual report details our financial stewardship, grant recipients, research milestones, and patient impact for the year. Available to all donors and the public.