International Waldenstrom's Macroglobulinemia Foundation

This just in from Sweden: Hannah Mobarak, IWMF’s Global Partner Manager, reported back from the European Hematology Association (EHA) 2026 Congress in Stockholm, where one message came through loud and clear: patient voices matter.

Key themes included the growing importance of patient experience data in medicine approval, the role of AI as a helpful tool — not a replacement for human care — and the need for honest, compassionate communication between patients and healthcare teams.

Hannah also had the chance to connect with key partners and experts, including members of the CLL and Follicular Lymphoma community, Dina Steagall of Abrale (Associação Brasileira de Câncer do Sangue), and WM specialist Professor Shirley D’Sa, strengthening international ties across the WM and blood cancer community.

And there’s more to come: stay tuned for short video clips with global WM specialists! Hannah chatted with Dr Simone Ferrero, Dr Tina Bagratuni, Prof Monique Minnema, Prof Christian Buske, Dr Dima El-Sharkawi, and Dr David Moreno, who will share insights for the patient community in their native languages to reach as many people as possible.

Thank you for your incredible work, Hannah!

Find out more about EHA 2026 at www.ehaweb.org/

Please join us in welcoming Kim Schwartz to the IWMF team as our new Grants and Contracts Administrator!

With more than six years of nonprofit grants management experience and a passion for mission-driven work, Kim brings valuable expertise in research administration, collaboration, and process improvement. Most recently, she supported cancer research funding and partnerships at Gateway for Cancer Research.

“Kim’s experience, professionalism, and collaborative spirit make her an outstanding addition to our team,” said Delora Senft, President and CEO of IWMF.

We’re excited to have Kim on board as we continue advancing our mission. Learn more about Kim in our Newsroom: https://ow.ly/8CEr50ZaHSx

A serious medical diagnosis can bring more than health challenges—it can also raise questions about finances, legal rights, benefits, and where to find support.

Join IWMF partner Triage Cancer for a FREE webinar on June 23 at 1:00 p.m. EDT to learn practical strategies and resources for navigating life after diagnosis. Led by Staff Attorney Susan Yoon, Esq., this session will cover financial and legal assistance, mental health services, patient advocacy support, and tips for accessing available benefits.

Whether you're newly diagnosed or further along in your journey, you'll leave with actionable information to help you move forward with confidence.

Register today here: https://ow.ly/Bftx50Z8rBU

Living with a rare disease can sometimes feel isolating, which makes the friendships formed through the WM community especially meaningful.

After years of connecting virtually through the IWMF LGBTQ+ Affinity Group, Gene, Lucie, and Annie discovered they would all be in Athens, Greece, at the same time—along with Gene’s husband, Scott. What started as a happy coincidence became a memorable in-person gathering over dinner on May 9.

For people living with a rare disease like Waldenstrom macroglobulinemia, finding others who truly understand the journey is uncommon. This special meetup is a reminder that the bonds formed within our community can bridge any distance.

Get support and make connections at IWMF.com.

Now available to the entire Waldenstrom community: a recording of the IWMF North Carolina Support Group's April 26 presentation featuring WM specialist Dr. Christopher Dittus, Lymphoma Program Clinical Director at UNC Department of Medicine.

Dr. Dittus shared expert insights on key topics affecting people living with WM, including:

• Understanding the diagnosis
• Managing hyperviscosity
• Frontline vs. relapsed therapies
• The next frontier in clinical trials

Whether you're newly diagnosed, a long-time patient, or a caregiver, this presentation offers valuable information and updates from a leading WM expert.

Christopher Dittus, DO, MPH, is a Professor of Medicine and the clinical director of the lymphoma program at UNC and specializes in the diagnosis and management of all types of lymphoma. Dittus’ major research interest is in WM and associated IgM-related disorders.

Watch the recording on our YouTube channel: https://ow.ly/Ausj50Z8rpP

For our Italian-speaking WM community 🇮🇹
We’re pleased to share an upcoming physician–patient webinar focused on Waldenstrom macroglobulinemia, brought to our attention by Berardino Porfirio of the AIL-FIL Lymphoma Patient Group.

SAVE THE DATE: June 9, 2026 | 17:00–18:30 (CEST)

This online event will be conducted in Italian and is dedicated to people living with WM, as well as their family members and caregivers. It will feature expert presentations followed by ample time for questions from the audience. Participation is free, but registration is required.

Learn more and register here:
Webinar Information (AIL Patient Portal): https://ow.ly/u3zV50Z8nFw
AIL Associazione Italiana contro Leucemie, linfomi e mieloma
_____
Per la nostra comunità italiana affetta da WM 🇮🇹

Siamo lieti di condividere un prossimo webinar medico–paziente dedicato alla macroglobulinemia di Waldenström, segnalato da Berardino Porfirio del gruppo pazienti AIL-FIL Lymphoma.

SALVA LA DATA: 9 giugno 2026 | 17:00–18:30 (CEST)

L’evento online, che si terrà in lingua italiana, è dedicato ai pazienti con macroglobulinemia di Waldenström, ai loro familiari e caregiver. Al termine delle presentazioni ci sarà ampio spazio per le domande del pubblico. La partecipazione è gratuita, ma è necessario registrarsi.

Maggiori informazioni e iscrizione qui:
Informazioni webinar (portale pazienti AIL): https://ow.ly/u3zV50Z8nFw

In case you need a little hope today, read more about Anita, a WM patient who made a new life at age 72!

Five years after sharing her Waldenstrom macroglobulinemia (WM) journey with IWMF, Anita reflects on resilience through profound change. While grieving the loss of her husband during the pandemic and rebuilding her life across the country, one thing remained constant: “My WM status hasn’t changed at all!” and “Imbruvica is still working for me (more than 12 years now).”

Today, she’s thriving in Northern California, surrounded by family, friends, and a supportive WM community.

Read her inspiring update here: https://ow.ly/Y2VT50Z7h6j

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📸 This just in from !
IWMF President & CEO Delora Senft shared these photos from Chicago, where she is meeting with leaders across the blood cancer community and following the latest developments in Waldenstrom macroglobulinemia (WM) research.

With more than 40,000 oncology professionals gathered at American Society of Clinical Oncology ASCO 2026, important conversations and discoveries are shaping the future of cancer care.

Among the WM-related presentations generating interest:
🔹 CLOVER-WaM (Abstract 7094): Iopofosine I-131 for patients whose disease progressed after BTK inhibitor therapy
🔹 Long-term follow-up data on next-generation BTK inhibitors, highlighting durable disease control and reduced cardiac toxicity (BeOne Medicines Portfolio Presentations)
🔹 Real-world treatment patterns, healthcare utilization, and economic burden insights (Abstract e121339-Poster Session))

Stay tuned for more updates from the meeting!
Find out more at https://www.asco.org/

Waldenstrom macroglobulinemia (WM) may be rare, but with the right information and support, you can navigate the journey with confidence. Our latest E-News is packed with helpful resources, updates, and tools to support you every step of the way.

Check it out here: https://conta.cc/4vbSfsO

Whether you’re a patient, caregiver, health care provider, researcher, or supporter, join IWMF to stay informed, connected, and empowered:

🔗 https://ow.ly/E8gC50YzMQI

Navigating WM—together.

WM is a rare disease — but with IWMF, you are never alone. 💙 The International Waldenstrom Macroglobulinemia Foundation offers support in many ways, including:

✔️Support & Affinity Groups
✔️Integrative Wellness Classes
✔️LIFELINE Volunteers
✔️Online Discussion Forums

Group meetings coming in June:
📅 WM Caregivers Support Group
Thursday, June 4 at 2:00 PM EDT
A supportive space for WM caregivers and care partners.

📅 WM People of Color Affinity Group
June 5 at 1:00 PM EDT
Join Paula and Mike for a sharing discussion.

📅 TP53 Affinity Group
June 14 at 6:00 PM EDT
Join Jane for a discussion on insights from the TP53 gene mutation sessions at the 2026 Columbus Ed Forum.

📅 LGBTQ+ Affinity Group
June 18 at 3:00 PM EDT
Group leaders Gene and Jane will host a sharing discussion.

📅 WM Support Ireland In-Person Meeting
Saturday, June 20 | 10:00 AM – 4:00 PM
Join host Bob Perry for IWMF’s second face-to-face meeting in Ireland this year.

Wherever you are in your WM journey, community matters — and IWMF is here for you. 💙

Reach out to [email protected] to join any group discussion, or find the info on our event calendar at iwmf.com. Meetings are hosted over Zoom unless otherwise indicated.