Understanding IgG4-RD: Two Years of Moving Hope Forward
Understanding IgG4-related disease (IgG4-RD) & Education: Two Years of Moving Hope Forward
November 11, 2025 marks two years since the launch of the IgG4ward! Foundation.
As we reflect on these past two years, one truth continues to guide our work: education, awareness and community are essential for anyone living with, treating, or supporting someone with IgG4-related disease (IgG4-RD).
In a recent conversation, Dr. John Stone, the IgG4ward! Foundation’s Executive Chairman, and Katharine Provencher, the Foundation’s Director of Advocacy and a caregiver to her husband who lives with IgG4-RD, as well, discuss what makes this disease so unique, why diagnosis can be challenging, and why patient-centered education is so critical.
What is IgG4-related disease?
IgG4-related disease is a chronic immune-mediated condition. While sometimes described as an autoimmune disease, researchers are still working to fully understand how the immune system contributes to its development.
One of the defining features of IgG4-RD is its ability to involve many different organs at once. Some of the most commonly affected areas include:
Pancreas
Major salivary glands
Lungs
Kidneys
Orbits (area around the eyes)
Blood vessels
Pachymeninges (the layers surrounding the brain and spinal cord)
Because it presents differently from person to person, IgG4-RD is often described as a protean disease meaning it takes many forms and can be difficult to recognize early.
A Recently Recognized Condition
Although people have been living with IgG4-RD for generations, the disease was not recognized as a distinct condition until 2003.
This means:
Many physicians were not trained to identify it
Diagnosis can take time and may require multiple specialties
Patients and caregivers often find themselves searching for clarity and direction
In just two decades, however, we have made significant progress. Clinicians and researchers now understand:
Some of the immune pathways that are essential to this disease
How organ involvement develops
How to target the immune system to treat the disease
Yet there is still work to do.
Why the IgG4ward! Foundation was Created
Even as scientific understanding expanded, one critical need remained:
Patients and caregivers were still asking the same deeply personal questions:
“What does this diagnosis mean for my life?”
“Why did this happen?”
“Is the disease genetic?”
“What can I do to feel better?”
“Where can I find others who understand?”
These are not medical questions. They are human ones.
IgG4ward! was created to provide reliable, straightforward, and balanced answers, so no one would have to face those questions alone.
Since its launch on November 11, 2023, the Foundation has worked to:
Educate patients, caregivers, families and clinicians
Expand awareness of IgG4-RD globally
Connect people through in-person and virtual events, programs and shared learning
Facilitate research and clinical collaboration
Serve as the trusted source of truth for the IgG4-RD Community
Two Years Later: Hope Moves 4ward
As we enter our third year, our purpose continues to deepen:
When people understand what they are facing, they can move 4ward
When they are supported, they can breathe
When they are connected, they can hope
Hope is not abstract here – it is practiced, strengthened and shared.
Double the Hope: Your Support Matters
Between now and December 31, an anonymous donor in the IgG4ward! community is matching all contributions 1:1, up to a total of $150,000.
This matching campaign is a challenge to the entire IgG4-RD community, and it is important that we rise to meet it together. All contributions of any size are important.
Your tax-deductible donation supports:
Our website-based educational efforts
Podcasts and webinars, including Fireside Chats and Caregivers’ Conversations
In-person and virtual events for the Community such as the PeachJAM (September 9-10, 2025), the CanJAM (October 17, 2025), and the EuroJAM in London (upcoming: May 22-23, 2026)
Scholarships permitting members of the IgG4ward! Community to attend patient-facing Jamborees (JAMs) according to need
The Online Community, the forum in which people living with IgG4-RD can converse with others experiencing similar challenges
Your support moves hope 4ward – one family, one clinic, one conversation at a time.
IgG4ward! Mission
To improve the lives of people living with IgG4-related disease through education, expanding disease awareness globally, facilitating groundbreaking research and serving as the trusted source of truth for patients, caregivers and healthcare providers.
