
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
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.