We are just beginning the process of gathering and summarizing resources to make it easier to find the information you need.

From connecting with support groups and treatment facilities to understanding the implications of medical research articles, we will be adding content to the sections below to help you on your journey.

We are HERE TO HELP

Patient/Family Sharing Networks

VEXAS Support Group

This Facebook group provides a “supportive and understanding environment where patients and their families can share their journeys, exchange experiences, and offer mutual support.” Numbering more than 550 members, it aims to “foster hope and strength” to those “navigating the challenges and uncertainties of living with this unique condition.”

Max Gyllenskog Memorial VEXAS Syndrome Awareness Page

This Facebook group was created by the family of a VEXAS victim to “spread the word about VEXAS Syndrome to help doctors and future victims understand it and get diagnosed quickly to try to get it under control.”

Medical Programs

  • New York University, USA

  • University of Maryland, USA

  • Mayo Clinic, USA

  • Cleveland Clinic, USA

  • National Institutes of Health, USA

  • Massachusetts General Hospital, USA

  • University College London Hospital, UK

  • Pitié-Salpêtrière Hospital, France

  • Charité – Universitätsmedizin Berlin, Germany

  • Leiden University Medical Center, Netherlands

  • Hospital Clínic de Barcelona, Spain

  • Karolinska University Hospital, Sweden

  • University Hospital of Zurich, Switzerland

  • Kyoto University Hospital, Japan

  • Seoul National University Hospital, South Korea

  • St. Vincent's Hospital, Australia

Patient Stories

A Former CIA Officer Died Hoping to Help Others with His Rare Disease, Vargas, Theresa. The Washington Post, February 3, 2024.

Medical Mysteries: Doctors Ruled out 50 Diseases. He was Still Sick, Boodman, Sandra. The Washington Post, September 9, 2023.

Medical Research Articles and Interviews

Our goal in this section is to provide summaries as well as the text of medical articles so that you understand the significance of major articles and how their findings build on the base of knowledge about VEXAS syndrome and effective treatments.