Why Was IgG4ward Created?
Over fifteen years ago, IgG4ward! Founder and Director of Clinical Rheumatology at Massachusetts General Hospital, Dr. John Stone, treated a young patient with unusual lumps in her neck. Upon further investigation, testing, and much digging, Dr. Stone discovered the cause of the lumps: a rare autoimmune disorder called IgG4-Related Disease (IgG4-RD).
While there were some published studies in Japan about the condition, it was virtually unheard of in the United States. However, while IgG4-RD was unknown, it didn’t mean people weren’t affected by it; patients and medical professionals just didn't know what it was – and many still don’t.
Having treated hundreds of patients, Dr. Stone has learned the greatest struggles in combating this disease, and at the root of those struggles is a lack of awareness.
This lack of awareness has not only caused patients to receive inaccurate cancer diagnoses and undergo unnecessary surgeries and procedures, but it has also cost them and their families time, money, and peace of mind.
With approximately 40,000 IgG4-RD patients in the U.S., and hundreds of thousands of patients worldwide, Dr. Stone knew these issues needed to be addressed on a larger scale, and thus, created IgG4ward!, the first and only organization solely dedicated to IgG4-RD advocacy, research, and support.
“The rapid momentum we have generated with IgG4ward! demonstrates the large unmet need we are addressing. Our plan is to create synergy within the community of IgG4-RD patients, their care partners, and clinicians to tackle every aspect of this disease.”
John H. Stone, Founder and Executive Chairman
Our mission as the first and only organization solely dedicated to IgG4-RD advocacy, research, and support is to improve the lives of people living with IgG4-RD through education, expanding disease awareness globally, facilitating groundbreaking research, and being the trusted source of truth for IgG4-RD patients, caregivers, and healthcare providers.
We are the only organization strictly dedicated to IgG4-RD patients worldwide and are the foremost trusted leaders in disease research, education, and awareness.
Providing a single source of truth for patients about IgG4-RD is critical in enabling patients to understand, live, and thrive with their illness successfully. We are committed to educating patients, caregivers, and the global rheumatology community.
We work in tandem with patients to make meaningful impact against IgG4-RD and foster collaboration among investigators studying this condition.
Our team of patients, caregivers, and disease experts is steadfast in the pursuit of better treatments and approaches to cure.
Every medical discovery we have made and will continue to make is rooted in scientific rigor.
Meet the IgG4ward! Advocacy Director
With a deeply personal connection to IgG4-RD and a professional background rooted in helping others, we are thrilled to name Katharine Provencher IgG4ward!’s Director of Patient Advocacy.
After a trip to the ER because of a mountain biking accident in 2020, Katharine’s husband Andy received the devastating news that he may have an aggressive form of cancer. After dozens of tests, appointments, heartache, and a year of waiting, Andy learned that what was thought to be cancer, among several other misdiagnoses, was IgG4-RD.
While Katharine, Andy, and their three amazing sons grappled with the news of Andy's condition, they still had much to be grateful for, including an accurate diagnosis and Katharine’s expertise in mental health.
With a master's degree in social work and nearly 20 years of experience making a positive impact in people’s lives through her profession, Katharine has developed a profound comprehension for evaluating needs, championing both individuals and groups, and engaging in collaborative efforts with interdisciplinary teams to deliver comprehensive support.
Meet the IgG4ward Board Members
John H. Stone, MD, MPH
Director of Clinical Rheumatology
Massachusetts General Hospital
Emma Culver, MD, PHD
Consultant Hepatologist & Gastroenterologist
John Radcliffe Hospital
Emanuel Della Torre, MD, PHD
Assistant Professor of Rheumatology
Vita-Salute San Raffaele University
Arezou Khosroshahi, MD
Associate Professor of Medicine
Matthias Lohr, MD, PHD
Gastroenterology & Hepatology
Karolinska Institutet | CLINTEC
Shankaran (Shan) Nair
Cory Perugino, DO
Assistant in Medicine
Massachusetts General Hospital
Yoshiya Tanaka, MD, PHD
Professor & Chairman
First Department of Internal Medicine
University of Occupational and Environmental Health, Japan
Wen Zhang, MD, PHD
Department of Rheumatology
Peking Union Medical College Hospital