VEXAS

THE RARE DISEASE THAT MAY NOT BE SO RARE

VEXAS syndrome is a recently discovered, life-threatening autoinflammatory disease that causes relentless fevers, blood abnormalities, and widespread inflammation that can damage organs and shorten lives. Driven by a genetic mutation acquired later in life, VEXAS is often misdiagnosed and can be fatal without proper recognition and treatment—making awareness, early testing, and research urgently important for saving lives.

Join us to learn, share, and support the growing community affected by VEXAS syndrome:

  • Patients facing life-changing symptoms and seeking answers

  • Families and caregivers navigating care, uncertainty, and daily challenges

  • Medical professionals working to diagnose, treat, and understand this complex condition

  • Researchers and advocates driving discovery, awareness, and testing.

Together, we can build a network of knowledge, compassion, and action.

Introducing the VEXAS Global Foundation

The VEXAS Global Foundation is a dedicated, patient-focused nonprofit committed to improving the lives of those affected by VEXAS syndrome—a rare and often misunderstood autoinflammatory disease. Our mission is to foster hope and progress for the VEXAS community through connection, education, research, and advocacy.

A Work in Progress The VEXAS Global Foundation is actively building its programs and partnerships. Our goal is to create a trusted hub where patients can connect with specialists, learn from each other, and stay informed about advances in diagnosis and treatment.

Patient Registry.

We are in the process of joining forces with NORD to establish an international patient registry—a vital step in advancing research and improving care for VEXAS patients.

Connections for Patients and Medical Professionals.

This registry will help connect patients to expert advice, facilitate networking among medical professionals, and accelerate scientific discovery.

Shared Stories and Coping Strategies.

In parallel, we are developing ways for the VEXAS community to share their stories, compare coping strategies, and access summaries of the latest research.

Early Testing and Diagnosis.

We are passionate advocates for early testing and diagnosis. Many with VEXAS endure years of symptoms before receiving answers; by raising awareness among healthcare providers and the public, we aim to spread the word about the diagnostic blood test that can shorten that journey and improve outcomes for all affected.