The VEXAS Foundation
Help solve the mystery of VEXAS syndrome
The VEXAS Foundation is a non-profit organization that aims to improve the lives of patients with VEXAS syndrome.
The VEXAS Foundation has three goals: raising awareness, exploring better ways to manage its symptoms, and ultimately discovering pathways to a cure. Through research, disease awareness, and a greater scientific understanding, the VEXAS Foundation strives to make a positive impact on the lives of people living with VEXAS syndrome.
VEXAS is a rare condition
that affects approximately
1 in 4,000
men over the age of 50
Most people suffer for
years and years,
never realizing
they have VEXAS
until it's too late
A revolutionary discovery
1990's - 2020
Genetics studies of autoinflammatory and autoimmune disease through biobanking at the National Institutes of Health (NIH)
2020 / October
Discovery of VEXAS syndrome published in the New England Journal of Medicine by Beck, DB et al.
2021
Identification that UBA1 mutations significantly contribute to various autoimmune diseases, including relapsing polychondritis, amongst other diseases
Approach to research
Great scientists are the driving force behind outstanding research. At the VEXAS Foundation we seek the best and brightest research scientists who possess the unique ability to think outside the box and view rare inflammatory diseases such as VEXAS syndrome as their personal challenge. We award grants to fund groundbreaking research that advances proven approaches and pursues novel ideas to improve patient outcomes.
We also understand the importance of raising awareness about VEXAS syndrome among healthcare professionals. That’s why we will provide grants to outreach programs that promote awareness of VEXAS syndrome and currently available treatment options.
Research and outreach programs we currently support
David Beck Lab in the Center for Human Genetics and Genomics and Division of Rheumatology at New York University Grossman School of Medicine. The lab focuses on understanding the genetic causes of disease, emphasizing inflammatory diseases and their underlying mechanisms. David B. Beck, MD, PhD, is the principal investigator of the David Beck Lab. Dr. Beck is recognized for his role in the discovery of VEXAS syndrome and a better understanding of the mechanism of pathogenesis of VEXAS syndrome, and the development of novel treatments for VEXAS syndrome and other autoinflammatory diseases.
The VEXAS Foundation would like to express its gratitude to Michael Linn and David Bammert of the Relapsing Polychondritis Foundation, for the numerous hours of consultation and generous financial support dedicated to the creation and continued support of the VEXAS Foundation. The revolutionary discovery of VEXAS syndrome demonstrated that autoimmune disorders previously thought to be unrelated to each other, like relapsing polychondritis (RP), polyarteritis nodosa, sweet syndrome, and giant cell arteritis, share a common acquired, somatic mutation in the UBA1 gene.3. Now, the Relapsing Polychondritis Foundation is expanding the impact of the VEXAS syndrome discovery by investing in a research project to continue the search for additional genetic mutations in patients with autoimmune and autoinflammatory diseases. Genetic variants will be correlated with the clinical history of the subjects, followed by laboratory-based experiments to determine the mechanism by which these genetic variations lead to systemic inflammation and disease. This project will leverage a collaborative network of talented researchers at NYU Langone and the NIH.