By Hannah Syed,
IWMF Global Partner Engagement Consultant
IWMF collaborated with WMUK to host the second European WM Patient Forum on Saturday, 21 September 2024, in London, UK. The event brought together patients, carers, healthcare professionals, and researchers from across Europe to advance knowledge and support for those affected by Waldenström’s macroglobulinemia (WM). The Forum achieved a great turnout of 216 attendees, with 135 joining in person and 81 participating online. The feedback highlighted the event’s success, with 90% of respondents rating the speakers as “good” or “excellent” and 94% reporting an improved understanding of the topics discussed. The robust agenda featured a mix of medical insights, personal experiences, and strategies for living well with WM and related conditions. Key sessions included “An Introduction to WM” with Dr. Dima El-Sharkawi, while Professor Christian Buske presented on “Current Treatment Landscape and Ongoing Research” alongside IWMF Chair Paul Kitchen, who discussed his personal treatment journey with Professor Buske.
From left – Panel Chair, Alison McKinney, Dorothy Hansen, Keith Melford, Jitendra Khakad, Beth Webster, Jeannette Quiroz Gómez
Dr. Josephine Vos led a session on “Clinical Trials Perspectives,” with Ellie Kishore describing her experience with clinical trials. Breakout sessions included “Living Well with Peripheral Neuropathy” with Dr. Shirley D’Sa, “Living Well with Amyloidosis” presented by Dr. Jahanzaib Khwaja, “Active Monitoring” by Dr. Catherine Ogilvie, and “Exercise” with Mark Wild. The Patient Treatment Panel provided valuable insights into diverse treatment journeys, featuring contributions from Dorothy Hansen, Keith Melford, Jitendra Khakad, Beth Webster, and Jeannette Quiroz Gómez from Chile. All of these sessions are recorded and will be available on the IWMF YouTube channel for viewing in January. A networking session offered patients and carers an opportunity to connect with one another and meet support group leaders.
Clinical faculty: Standing from left: Dr. Josephine Vos, Dr. Jahanzaib Khwaja, Dr. Christian Buske; Seated from left: Dr. Dima El-Sharkawi, Dr. Catherine Ogilvie, Dr. Shirley D’Sa
Leading WM experts also showcased their research through posters, highlighting studies conducted across Europe. These included:
- “Immunoglobulins in WM patients” by Nicole Japzon
- “The incidence, characteristics, and management of IgM-associated neuropathy” by Oliver Tomkins
- “Type I cryoglobulinaemia in IgM-related disorders” by Dr. Jahanzaib Khwaja
- “The MAGNAZ trial exploring treatment for IgM MGUS and MAG antibody-related polyneuropathy” by Max van de Mortel
- “Zanubrutinib’s tolerability and efficacy in IgM amyloidosis associated with WM” by Dr. Wouter Verhaar
- “WM-VOICE study on patient treatment preferences” by Dr. Anne-Marie Becking
- “The European Consortium for Waldenström’s Macroglobulinemia (ECWM)” by Lisa Kaiser
The program was well-received, and comments from participants included: “Excellent reminder of WM issues and update on future;” “Super update and lots of my questions answered;” and “I think it has made my mother (WM patient) consider joining support groups.”
Looking ahead: next European WM Patient Forum in France
The next European WM Patient Forum is being planned for Wednesday, 21 May 2025, in the picturesque town of Chantilly, France. This unique event will coincide with the European Consortium for WM, organised by Professor Christian Buske and Lisa Kaiser, which will bring together expert clinicians and researchers in WM across Europe. A joint session at the Chantilly Patient Forum will bring together European doctors, researchers, patients, and carers for an unprecedented exchange of insights. Dr. Steven Treon from Dana-Farber Cancer Institute is also expected to join this meeting. Please be on the lookout for further details about the next European WM Patient Forum in the coming weeks. IWMF and WMUK are dedicated to continue to strengthen the global WM community, fostering education, collaboration, and hope for those living with this rare condition.
