IgG4ward

IgG4ward! Foundation is the only organization dedicated solely to IgG4-related disease (IgG4-RD ), providing trusted education, advocacy and support.

We empower patients, caregivers, and healthcare providers with resources to navigate IgG4-RD.

03/18/2026

📣Tomorrow at 1 PM ET, we’ll be holding this month’s Caregiver’s Conversation.

For many people navigating IgG4-related disease (IgG4-RD), one of the more challenging parts is the ongoing adjustments.

Changes in energy.
Shifts in symptoms.
The unpredictability that can show up, even when things seem steady.

This conversation will be hosted by Katharine Provencher (caregiver, Director of Advocacy and Community Engagement), alongside Nicole Meline — and will also include the patient voice of Kim and Andy, the Foundation’s Mental Health Patient Ambassadors.

Together, the conversation will include both lived experience and practical tools, including:
• a guided grounding practice
• discussion around the nervous system and ongoing uncertainty
• reflections from people navigating IgG4-RD
• tools that can be used in everyday life

If this feels relevant to where you are right now, we hope you will join us.

If you’re unable to attend live, you can still register — we’ll send the recording to everyone who signs up.

Register here:
https://us06web.zoom.us/webinar/register/WN_105uVUmyQEaz42sA77kH0g?_gl=1*j238ic*_gcl_au*NTk1MDE1OTg4LjE3NzMzMjgxODc.*_ga*MTUzNTU5NTM3Ny4xNzczMzYyNTY2*_ga_L8TBF28DDX*czE3NzM4NjY5MjMkbzgkZzEkdDE3NzM4NjY5NDYkajM3JGwwJGgw #/registration

03/17/2026

Sometimes what people need most isn’t more information.
It’s a space to talk with others who understand.

Our monthly IgG4-RD support group meets this Thursday at 5 PM ET.

No agenda.
No expectations.
Just a space to connect, share, or simply listen.

Open to patients, caregivers, and others navigating IgG4-related disease (IgG4-RD).
To help keep this a comfortable space for sharing, this group is not open to industry participants.

Everyone shows up differently: whether that means sharing, listening, or just being there.

Register to receive the link to join the meeting:
https://us06web.zoom.us/meeting/register/fh-EqRaURyu7fXhLotiJow

💙💙💙

03/16/2026

Living with a chronic illness often means becoming very good at adjusting.

Energy changes.
Symptoms shift.
Some days simply ask more of you than expected.

For many people navigating IgG4-related disease (IgG4-RD), that constant need to adjust can take a real amount of mental and emotional energy.

This week’s Caregiver’s Conversation will spend time in that space — exploring practical ways people begin to find steadiness alongside medical care.

We’ll be joined by Nicole Meline and members of our community for a conversation that will include:

• a guided grounding practice
• discussion about the nervous system and chronic illness
• reflections from people navigating IgG4-RD
• practical coping tools that can be used in everyday life

No perfect answers. Just tools that might help make the day feel a little steadier.

The conversation is open to anyone interested in navigating life with IgG4-RD: patients, caregivers, clinicians, researchers, and industry partners.

If this topic speaks to where you, we would be honored to have you join the conversation.

If you're unable to attend live, you’re still welcome to register. We’ll send the recorded conversation to everyone who signs up as soon as it becomes available.

Register here:
https://us06web.zoom.us/webinar/register/WN_105uVUmyQEaz42sA77kH0g

03/13/2026

Someone in our community once put it this way:
“It’s easy to get stuck in the mind spiral.”

You can be feeling relatively good for a while… finding a rhythm again… and then something shifts.

Symptoms show up again.
Energy drops.
Or maybe it’s just the thought that creeps in.
Is my disease active?
Do I need treatment?

For many people navigating IgG4-related disease, this mental loop is part of the experience.

Our next Caregiver’s Conversation is going to talk openly about that side of things — the uncertainty, the mental loops, and how people begin to cope with it over time.

Nicole Meline will be joining us again along with our IgG4ward! Mental Health Ambassadors Andy and Kim.

The hope is that people leave feeling understood… and maybe with a few small practices that feel realistic in everyday life.

If this resonates with you, we hope you’ll join the conversation.

Please register here: https://us06web.zoom.us/webinar/register/WN_105uVUmyQEaz42sA77kH0g #/registration

03/10/2026

Sometimes the most meaningful conversations happen when people simply take a moment to reflect together.

In this IgG4ward! Fireside Chat, Dr. John Stone, Dr. Khosroshahi, and Dr. Carruthers reflect on conversations that came out of the PeachJAM and CanJAM — gatherings that brought patients, caregivers, physicians, researchers, and industry together around IgG4-related disease.

The discussion moves between science and lived experience.

There are moments about research progress, treatment questions, and where the field may be headed. And there are also moments that speak to something just as important — connection within the IgG4-RD community.
We’ve also included a reading guide for those who like something to follow along with while watching.

The full Fireside Chat and reading guide are available on our website.

We’ve added the link in the comments below.

03/06/2026

What is your Good Question about IgG4-RD?

Our Good Question Series features questions from the community that are answered by leading IgG4-RD experts. If there’s something you’ve been wondering about—big or small—we’d love to hear it.

Submit your question here: https://bit.ly/4sPfnfJ

Your question may be featured in a future Good Question resource.

03/05/2026

Introducing the IgG4ward! EuroJAM 2026 Agenda!

We’re excited to share the full agenda for IgG4ward! EuroJAM, taking place May 22–23, 2026 in London, UK.

The EuroJAM brings together clinicians, researchers, specialist nurses, dietitians, and patient advocates from across Europe and the United States who are working to improve the understanding and care of IgG4-related disease (IgG4-RD).

Over two days, the program will include:
• Keynote lectures from global experts
• Plenary sessions focused on diagnosis and treatment
• Interactive breakout discussions on organ-specific IgG4-RD
• Multidisciplinary perspectives on patient care
• A Key Opinion Leader Q&A panel

Speakers represent leading institutions including Oxford, UCL, Imperial College London, Harvard Medical School, San Raffaele Hospital in Milan, Karolinska Institute, and many others.
We’re honored to welcome an outstanding group of faculty, including:
Dr. Emma Culver
Dr. John H. Stone
Dr. Emanuel Della Torre
Dr. Matthias Löhr
Dr. Maria Leandro
Dr. Marco Lanzilotta
Dr. Nicolas Schleinitz
Dr. Fernando Martínez-Valle
Dr. Jan van Laar
…and many more.

If you’re interested in what the two days will look like, take a look at the full program:

▫️View the full agenda:
https://igg4ward.org/igg4ward-eurojam-agenda/

▫️Learn more about EuroJAM or register:
https://igg4ward.org/events/igg4ward-eurojam-patient-jamboree/

📍 London, United Kingdom
📅 May 22–23, 2026

03/03/2026

“What we practice, we become.”

For many in this community, diagnosis didn’t come quickly. It came after months, sometimes years, of not knowing. And even once there’s a name for it, the pressure doesn’t simply disappear.

In this clip, Nicole Meline offers a question worth sitting with:
Are my thoughts nourishing me… or are they depleting me?

That’s where our next Caregiver’s Conversation begins.
We’ll talk about coping. How tension settles in the body. How thought patterns take root. And what we can actually practice to shift them.

If this question resonates, join us for the full conversation.
🔗 Register here: https://igg4ward.org/events/coping-with-igg4-related-disease/

02/28/2026

Rare Disease Day reminds us that sometimes the hoofbeats really do belong to a zebra. 🦓

In this short video, Katharine, our Director of Advocacy and Community Engagement, shares her family’s experience with a 15-month delay in diagnosis. Dr. Stone explains why IgG4-related disease is often mistaken for something more common.

It’s only a few minutes long — but it speaks directly to why awareness matters.

We encourage you to please take a few minutes to watch and share. This may help someone else who may still be searching for answers.

02/27/2026

It’s Rare Disease Week. Rare Disease Day is tomorrow.

For the 300 million people worldwide living with a rare disease, this week hits differently. In our IgG4-RD community, it’s personal.

Living with IgG4-related disease is complex. There’s the medical side — appointments, medications, monitoring. But there’s also the part people don’t always see.

The stress before results.
The frustration of having to explain a disease most have never heard of.
The isolation that can come with being “rare.”

Mental health is not separate from this experience. It’s part of it.

At IgG4ward!, we’ve always believed that caring for our community means caring for the whole person.

That’s why our partnership with Give an Hour matters so much.

Together, we’re expanding access to no-cost mental health support for individuals and families impacted by IgG4-RD.
Support should be accessible. And no one in this community should feel like they have to navigate rare alone.

This week we raise awareness. Tomorrow we stand together — visible, strong, and rare.

💙💚💙💚

02/26/2026

Twenty years without answers.

That’s how long Zoe lived with symptoms before receiving a diagnosis of IgG4-related disease.

In our Rare Disease Week blog, we share her journey — the referrals, the fragmentation, the moment she finally heard a name for what she had been living with.

Awareness changes timelines.
And sometimes, it changes lives.

Zoe’s story is now live on our blog. Please read it below.

💙💙💙

🔗https://igg4ward.org/igg4ward-educational-resources/rare-disease-week-igg4-related-disease-awareness/

02/25/2026

Two years ago, our patient ambassador Andy, participated in the “Of course I…” trend, but his version wasn’t light or funny.

It was about living with IgG4-related disease.

“I have IgG4-related disease. Of course you’ve never heard of it.”

As we continue our Rare Disease Week countdown to Rare Disease Day on 2/28, we’re sharing his message again.

For many in the IgG4-RD community, the symptoms are invisible. The fatigue is real. The pain is real. The delays in recognition can be real.

This week, our focus remains on sustained visibility for IgG4-related disease and the community it impacts.

Address

Boston, MA
01742

Website

https://igg4ward.org/

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