VEXAS Syndrome Care Program
At NYU Langone’s Inflammatory Disease Genetics Program, our team of geneticists, rheumatologists, and hematologists collaborates to provide unmatched care to people with VEXAS syndrome.
VEXAS—the name is an acronym for vacuoles, E1 enzyme, X-linked, autoinflammatory, and somatic—syndrome is a rare, serious condition that develops in adults and causes a broad range of progressive inflammatory and hematologic symptoms, including fever, fatigue, painful skin rashes, pain and swelling of the ears and nose, shortness of breath, and low blood cell counts.
Because VEXAS syndrome is a newly recognized disorder and its symptoms overlap with many common rheumatologic and hematologic conditions, it is a diagnosis often overlooked. The only reliable way to establish a VEXAS syndrome diagnosis is by genetic testing of the UBA1 gene. The diagnosis of VEXAS syndrome can lead to improvements in medical management and more-effective treatments for patients.
The specialists on our multidisciplinary team—led by David B. Beck, MD, PhD, of the Beck Lab and a member of the research team that first identified VEXAS syndrome—are recognized experts in their fields, including genetics, rheumatology, and hematology. We work with you and your doctor to provide a personalized treatment plan for your specific constellation of symptoms and needs.
Make an Appointment
We see patients in Manhattan at 333 East 38th Street, on the fourth floor. But whether you live locally or outside of New York City, please feel free to contact our team with any questions about VEXAS syndrome. To make an appointment or learn more about VEXAS syndrome, contact us at BeckClinic@NYULangone.org. We welcome inquiries from patients, their loved ones, and healthcare providers.
Prior to your appointment, please provide the following information, which is important for our assessment:
- all genetic testing results, especially any that include the UBA1 gene
- bone marrow biopsy results
- any recent rheumatology and hematology provider notes and blood work results
Research and Clinical Studies
In addition to our goals of improving our patients’ health, care, and quality of life, our team actively conducts research and clinical studies to better understand the condition. Understanding why VEXAS syndrome occurs, its long-term effects, the genetic and molecular mechanisms of the condition, and why it presents differently across patients will help us develop new, more-effective treatments.
It is helpful for people with rare conditions like VEXAS syndrome to join clinical trials because finding an adequate number of patients for effective clinical studies—as we are doing at NYU Langone’s VEXAS Syndrome Care Program—can be challenging.
Learn more about our current active trial, the Autoimmune and Autoinflammatory Genetics Study, at ClinicalTrials.gov. If you are interested in being involved in research and potential clinical studies, contact Dr. Beck and our team at BeckClinic@NYULangone.org.