GMAN Members Reflect & Plan for 2023

By Serdar Erdoğan IMF Director, GMAN and European & Middle Eastern Patient Programs

On December 15, 2022, more than 30 members of the IMF’s Global Myeloma Action Network (GMAN) came together for a virtual meeting to review the key research outputs from the 64th Annual Meeting and Exposition of the American Society of Hematology (ASH), which was held December 10–13 in New Orleans, LA.

Key research abstracts from ASH 2022

Dr. Brian G. M. Durie, IMF Chairman & Chief Scientific Officer, presented what he described as a “flavor” of the ASH conference, conveying the areas of greatest interest and importance for the myeloma community. For Dr. Durie’s comprehensive overview of ASH 2022, please turn to page 5 of this edition of Myeloma Today.

New GMAN committee and subgroups

Yelak Biru, IMF President & Chief Executive Officer, spoke about the three key objectives of the IMF’s GMAN network: bringing support and education to patients and their care partners, raising awareness of myeloma, and improving access to diagnosis and treatment. In service of these objectives, GMAN has formed a steering committee co-chaired by Yelak and Martine Elias (Executive Director, Myeloma Canada). Other members of the steering committee include myself, Mira Armour (CEO, Mijelom CRO, Croatia), and Hayley Beer (Myeloma Clinical Nurse Consultant, Myeloma Australia). The committee’s four subgroups will focus on access to care, health policy, clinical research, and capacity building. The committee and subgroups will report on their topics at the next GMAN Summit, which will be held in June 2023 in Frankfurt, Germany.

Reflections on successes of 2022

During the past year, GMAN held 13 Patient & Family Seminars in 10 countries and in a variety of formats: in person, online, and as hybrid sessions. The IMF’s groundbreaking educational seminar program was brought to Austria, Croatia, Czechia, Denmark, Iceland, Norway, Poland, Portugal, Spain, and Turkey. In addition, GMAN hosted three successful workshops for doctors.

PATIENT ADVOCATES AT ASH 2022 – CONTINUED

The combined participation of nearly 9,000 meeting attendees demonstrates GMAN’s success in driving its objectives forward. Several representatives of GMAN’s member organizations reported on their work during 2022, including Viorica Cursaru (President, Myeloma Euronet România), who described the support being offered to Ukrainian war refugees with myeloma who have crossed into Romania. Printed information about available support and services for patients and care partners is distributed in Ukrainian, English, and Romanian.

GMAN is working across European organizations to further assist myeloma patients affected by the war in Ukraine. For example, to help safeguard continuity of care for this population, GMAN is working closely with call centers and support groups in Poland, which has a high number of Ukrainian refugees.

In closing

The closing session of the GMAN meeting was a reminder from Dr. Durie that myeloma patients should remain vigilant in protecting themselves from the potential risks of COVID-19 infection by being vaccinated and boosted, and wearing high-quality masks during group gatherings, especially indoors. Dr. Durie expressed his thanks to the members of GMAN for their involvement in the network and their valuable contributions to their local myeloma communities. We also thank our industry partners from across the globe for supporting the important work of GMAN and its member organizations. MT

In 2013, the IMF led the development of the Global Myeloma Alliance, a group of myeloma patient organizations from around the world, which became the Global Myeloma Action Network (GMAN) in 2014. GMAN’s global mission is to improve the lives of myeloma patients, raise myeloma awareness, enhance the capabilities of patient advocacy groups, build the capacity of local myeloma organizations, and increase worldwide access to medicine and treatment.

FROM PREVIOUS PAGE about your disease, appreciating the importance of having an informed dialogue about your myeloma with your healthcare team, and maintaining hope for the future.”

– Michael Tuohy, 23-year myeloma survivor

“Attending ASH these past two years as a patient advocate has been one of the silver linings of having myeloma, helping me think of more ways to use my science skills and educational focus to help other patients. I’m so incredibly grateful for all the IMF does!”

– Jill Zitzewitz, PhD

Each year, it is my honor and privilege to lead a team of support group leaders at ASH. This year, Jessie Daw called us a #FaMMily and I couldn’t agree more. We are all in this together, supporting each other. On behalf of the IMF, I would like to express my thanks to our team of ASH 2022 patient advocates for their commitment to the myeloma community, and together we all would like to express our thanks to the IMF’s industry partners who supported our ASH attendance: Amgen, Karyopharm Therapeutics, and Takeda Oncology. MT

For information about joining a local myeloma support group, or launching one in your area, please contact Robin Tuohy at rtuohy@myeloma.org or visit myeloma.org/support-groups