International Waldenstrom's Macroglobulinemia Foundation

International Waldenstrom's Macroglobulinemia Foundation WM is usually an indolent and chronic disease that is treatable, but not yet curable.

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a patient-founded and patient-driven, nonprofit organization dedicated to providing support and education to everyone affected by WM while advancing the search for a cure. Waldenstrom's macroglobulinemia is a rare form of non-Hodgkin's lymphoma, whereby the patients usually experience an infiltration of lymphoplasmacytic (cance

r) cells in the bone marow. Approximately 1,500 new cases of WM are diagnosed each year in the US, and about 3,000 worldwide. The median age of diagnosis is 63 years, although some have been diagnosed as early as 19 and as late as 85. Average life expectancy is 11.5 years, although recent improvments in treatment options are providing a more promsing future for patients.

🩸Still have questions about using AI in blood cancer care? Join us on Thursday, July 15 at 1 PM ET / 6 PM BST for our fi...
06/25/2026

🩸Still have questions about using AI in blood cancer care?

Join us on Thursday, July 15 at 1 PM ET / 6 PM BST for our first Educational Forum Watch Party as we revisit one of our most popular sessions: Empowered by AI: Navigating Blood Cancer Care Through Technology with Lisa Porat and Anand Reddi.

Register today: https://ow.ly/sF3Q50ZhlBJ

This engaging discussion explores how artificial intelligence can help patients, caregivers, healthcare providers, and advocates navigate the complexities of blood cancer care with greater confidence and empowerment.

We're especially grateful to Lisa Porat, MSW, LCSW, FAOSW, BeOne Medicines Director of North America Patient Partnerships, and Anand Reddi, BeOne Medicines Global Head of Direct-to-Customer Innovation and Digital Health, for joining us live to answer additional questions in this new watch party format.

📺 Watch the session together
💬 Stay for a live Q&A
❓ Submit questions in advance: https://ow.ly/4G4J50ZhlBI

Register today: https://ow.ly/sF3Q50ZhlBJ

Balancing work and cancer care can be overwhelming—but no one has to navigate it alone. IWMF is proud to partner with Ca...
06/23/2026

Balancing work and cancer care can be overwhelming—but no one has to navigate it alone.

IWMF is proud to partner with Cancer and Careers for the virtual National Conference on Work & Cancer on Friday, June 26, 2026.

This free, daylong conference on Zoom will offer practical guidance for working people managing cancer treatment, recovery, and employment—from balancing treatment and work to disclosure decisions, side-effect management, communication strategies, job searching, and more.

Share this opportunity with anyone who could benefit from support, resources, and expert insight at the intersection of work and cancer.

Register here: https://ow.ly/fqCF50Zg21l

CEs/PDCs are available for nurses, social workers, and HR professionals.

☘️Get in person support - for people living with Waldenstrom macroglobulinemia in the Republic of Ireland and Northern I...
06/16/2026

☘️Get in person support - for people living with Waldenstrom macroglobulinemia in the Republic of Ireland and Northern Ireland.

Join Robert Perry (Bob) for a second face-to-face meeting in Ireland this year, on Saturday, June 20, at 10am (Irish Standard Time) at Cuisle Cancer Support Centre in Co. Laois, Ireland.

Register here: https://ow.ly/zV5U50ZcuO9

For any questions contact: [email protected]

This just in from Sweden: Hannah Mobarak, IWMF’s Global Partner Manager, reported back from the European Hematology Asso...
06/15/2026

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 s...
06/12/2026

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 righ...
06/11/2026

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 esp...
06/10/2026

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 pres...
06/08/2026

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 Waldenst...
06/06/2026

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...
06/03/2026

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

AbbVie

Address

1449 S Michigan Avenue STE 13329
Chicago, IL
60605

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+19419274963

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