We fund the investigators, clinical trials, and published science that are
changing what VEXAS means for patients. Every dollar moves this work forward.
Our research program
Funding the science that saves lives
The VEXAS Foundation awards research grants to leading investigators focused on
understanding the disease, improving treatments, and ultimately finding a cure.
Below are our current and upcoming grant cycles.
Investigating the genetic underpinnings of VEXAS and identifying novel treatment pathways — including JAK inhibitors and azacitidine — to improve patient outcomes.
Building a global database of VEXAS patients to accelerate discovery, standardize diagnostic criteria, and connect patients to specialist care centers worldwide.
We 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.
Clinical trials are how better VEXAS treatments get developed — and how patients
gain access to therapies before they are widely available. Because trials open
and close continually, we point you to ClinicalTrials.gov, the U.S. National
Library of Medicine's official registry, so you always see the current list
rather than an outdated one.
Always current
Search all VEXAS trials on ClinicalTrials.gov
Every registered VEXAS study worldwide — recruiting status, locations,
eligibility criteria, and study contacts — maintained by the U.S. National
Library of Medicine and updated by the trial sponsors themselves.
Why trials matter for VEXAS: there are currently no FDA-approved
treatments specifically for VEXAS syndrome. Every therapy in use today is
prescribed off-label. Clinical trials are the only route to approved,
purpose-built treatments.
How to search
1
Search the condition
Enter VEXAS syndrome in the condition field. You can also try UBA1 to catch studies indexed by the gene rather than the syndrome name.
2
Filter by status and location
Narrow to Recruiting and Not yet recruiting to see studies you could still join, then filter by country or distance from home.
3
Read eligibility carefully
Each listing has an eligibility section and a study contact. Bring anything promising to your rheumatologist or hematologist before reaching out.
Understanding trial status
RecruitingActively enrolling participants now. These are the studies most likely to be open to you.
Not yet recruitingApproved but not open yet. Worth noting and checking back, or asking the listed contact about timing.
Active, not recruitingRunning, but enrollment has closed. Results may be published later — useful context, not an option to join.
CompletedFinished. Findings often appear in the published literature — see our Published Studies tab.
Questions worth asking your care team
If you find a study that looks relevant, these are useful things to raise at your next appointment.
Do I meet the eligibility criteria for this study?
How would participating affect my current treatment?
What are the risks and possible side effects?
What travel, visits, or time commitment is involved?
Are any costs covered, and what would I pay?
Can I leave the study if I change my mind?
The VEXAS Foundation does not run clinical trials and cannot advise on eligibility.
Trial decisions should always be made with your treating physician. If you do not
currently have a physician experienced with VEXAS, our
Medical Centers
listing may help.
Peer-reviewed literature
Published studies on VEXAS
Key peer-reviewed publications that have shaped our understanding of VEXAS
since its discovery in 2020. Filter by topic or view all.
These centers have direct experience diagnosing and treating VEXAS syndrome.
They can work alongside your local medical team to provide more informed,
effective care.
United States — Centers of Excellence
NYU Langone Health
New York, NY
Dr. David B. Beck (internist, geneticist) Dr. Gary Ho (rheumatologist) Dr. Jun Choi (hematologist/oncologist)
Dedicated multidisciplinary VEXAS Syndrome Care Program. Participates in ongoing research studies and clinical trials.
Mayo Clinic
Rochester, MN & Scottsdale, AZ
Dr. Mathew Koster · Dr. Kenneth Warrington (rheumatology) Dr. Abhishek Mangaonkar · Dr. Mrinal Patnaik (hematology) Dr. Megan Sullivan · Dr. Yael Kusne (Scottsdale)
Developed specialized testing and treatment approaches for VEXAS. Contributes significantly to diagnosis and management research.
National Institutes of Health (NIH)
Bethesda, MD
Dr. Peter Grayson (rheumatologist) Dr. Dennis Hickstein (hematologist/oncologist)
Actively advancing VEXAS research through dedicated programs and clinical trials, including the Phase II HSCT trial. No cost to trial participants.
University of Maryland School of Medicine
Baltimore, MD
Dr. Marcela Ferrada
Multidisciplinary program involving rheumatologists and hematologists focused on VEXAS syndrome's complex symptoms.
Cleveland Clinic
Cleveland, OH
Rheumatology & Hematology departments
Comprehensive care for VEXAS patients involving rheumatologists and hematologists to manage the syndrome's complex symptoms.
MD Anderson Cancer Center
Houston, TX
Dr. Danielle Hammond (hematologist/oncologist) Dr. Maryan Buni (rheumatologist)
Developed a practice serving patients with VEXAS syndrome and related clonally driven hemato-inflammatory diseases.
International — Research Networks & Registries
The networks below coordinate VEXAS research and registries in their countries. They are not a directory of clinics accepting direct referrals — if you are outside the United States, ask your rheumatologist or hematologist to contact the relevant national network about referral to a centre with VEXAS experience.
🇬🇧
VEXNET
United Kingdom
Leeds Teaching Hospitals NHS Trust
King's College Hospital, London
Royal Free Hospital, London
St George's University Hospitals, London
Cambridge University Hospitals
Oxford University Hospitals
The UK VEXAS interest group. These six tertiary centres are described in published research as the primary diagnostic and treatment hubs within the VEXNET collaboration.
🇫🇷
FRENVEX
France
Hôpital Tenon, AP-HP, Paris
Hôpital Saint-Antoine, AP-HP, Paris
Hôpital Cochin, AP-HP, Paris
Hôpital Saint-Louis, AP-HP, Paris + centres nationwide
The French VEXAS study group — one of the largest VEXAS registries worldwide. Source of the major azacitidine and targeted therapy studies referenced on this site.
🇩🇪
German VEXAS Registry
Germany
RWTH Aachen University
Universitätsklinikum Carl Gustav Carus, Dresden
Klinikum Rechts der Isar, TU München
Universitätsklinikum Leipzig
A national prospective registry established in May 2024 collecting clinical, treatment and outcome data across German centres.
🇪🇺
ERN RITA
European Reference Network
European Reference Network on Rare Immunodeficiency,
Autoinflammatory and Autoimmune Diseases
An EU-wide network connecting specialist centres for rare autoinflammatory conditions. Several VEXAS centres across Europe participate, including Leeds in the UK.
International VEXAS guidance now available
The American College of Rheumatology, working with the International VEXAS Working Group Expert Panel, has published the first international guidance statement for the diagnosis and management of VEXAS syndrome.
VEXAS was only identified in 2020. The research pipeline is young, underfunded,
and entirely dependent on philanthropic support. Here's what's at stake.
Over a million people may be undiagnosed
Globally, VEXAS may affect more than a million people — most of whom have never received a correct diagnosis. Funding awareness and research speeds the path to diagnosis for patients who currently have none.
No FDA-approved treatments exist
Every treatment currently used for VEXAS is off-label. Funding clinical trials is the only path to approved, purpose-built therapies. Your donation directly supports that pipeline.
The research window is now
The pace of VEXAS discovery since 2020 has been remarkable. Researchers are actively building the foundational knowledge needed to develop a cure. Early funding at this stage has an outsized impact.
Only ~30 patients have received a transplant
HSCT is the only known potential cure, yet only about 30 of the estimated 15,000 diagnosed US patients have undergone it. Funding research and awareness helps more patients access the care that could change their lives.
Support the research
Fund the science that changes outcomes
72% of every dollar goes directly to research grants.
