The Global Myeloma Action Network (GMAN) Summit
A summary report from the 2023 GMAN Annual Meeting which took place in-person from June 2-4, 2023, in Frankfurt, Germany.
Founded in 2013 by the International Myeloma Foundation (IMF), the Global Myeloma Action Network (GMAN) is composed of multiple myeloma patient organization leaders around the world with the global mission of improving the lives of myeloma patients, raising awareness of multiple myeloma, enhancing the capabilities of patient advocacy groups, building the capacity of local myeloma organizations, and increasing worldwide access to medicine and treatment.
GMAN upholds its mission by improving access to care; influencing health policy change favorable to myeloma care, research, and drug access; boosting knowledge and access to clinical research; and enhancing GMAN’s collective capacity through sharing best practices while working together as a global community.
This year’s annual GMAN Summit was held in person from June 2-4, with over 30 advocacy leaders of myeloma patient organizations from 30 countries in attendance to share best practices and to address mutual areas of concern of the global myeloma community.
IMF Director of GMAN, Europe & Middle East Patient Programs Serdar Erdoğan and IMF President & CEO Yelak Biru led the sessions.
Yelak opened the summit by warmly welcoming the attendees and speaking about the gains GMAN has made over the last decade, including establishing the International Myeloma Patient Charter—a bill of rights for patients with myeloma that helps ensure that no matter where in the world a person lives, the following principles apply to people affected by myeloma and those involved in their lives and their medical care.
Yelak also talked about building the capacity of myeloma advocacy organizations across the globe, while noting that there is still much to do.
IMF Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie, who is also the Executive Chairman of the Black Swan Research Initiative (BSRI), addressed the group via a pre-recorded video. He reviewed recent data from the IMF’s iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) Project—a population-based screening study for monoclonal gammopathy of undetermined significance (MGUS) led by Dr. Sigurður Kristinsson (University of Iceland—Reykjavík).
According to Dr. Durie, the many diverse outcomes of the iStopMM study will not only benefit the country of Iceland but also the global myeloma community as a whole by helping establish best practices for identifying, preventing, and treating myeloma.
Highlights of the 2023 GMAN Summit include:
- Three GMAN member organizations who are recipients of the 2021 Susie Novis Durie (SND) Grants (Myeloma Australia, Suomen Syöpapotilaat Finland, and Myeloma Euronet Romania) shared the outcomes of their projects:
- Hayley Beer of Myeloma Australia did a remote presentation about how the SND Grant helped with the diversification of services offered to patients with myeloma, including younger people who have been diagnosed with myeloma. The new online support group is attracting participants from most states and territories in Australia, who attend meetings, webinars, and podcasts that feature guest speakers to address the needs of younger myeloma patients. A list of resources for younger patients is currently in development.
- Suvi Sileekangas of Suomen Syöpäpotilaat, Finland shared how the SND Grant enabled her to hold a hybrid educational event for 140 attendees in Tampere, Finland. Attendees included both myeloma patients and their loved ones, who gathered in person or online to learn from a myeloma specialist, a myeloma patient, and a psychologist.
- Viorica Cursaru of Myeloma Euronet Romania shared how the SND Grant supported ensuring continuity of care of Ukrainian refugees who have myeloma and who fled to Romania from Ukraine. These efforts include translating materials and connecting the refugees with appropriate medical specialists in Romania.
- Recipients of the 2022 Susie Novis Durie Grants were announced:
- A review of GMAN’s recent accomplishments and activities which helped fulfill the organization’s global mission
- Reaching 35 million people globally via social media during the 2023 Myeloma Action Month (MAM) campaign
- Translating myeloma statistics ang graphs into multiple languages
- Providing humanitarian aid to Ukraine and to the Republic of Turkey
- Producing videos about myeloma patients and their treatment journeys.
- IMF Board Member, GMAN Steering Committee Member, and Myeloma Canada Executive Director Martine Elias shared new governance plans and structures that will help GMAN focus on achieving its goal—improving outcomes for myeloma patients globally by bringing world organizations and advocates together to share challenges, develop solutions, and come up with best practices to better serve the myeloma community at large.
- The three-day summit included breakout sessions with GMAN Working Groups, where facilitator Jeff Bateman challenged attendees to envision what an ideal future would look like for myeloma patients in 2030 while focusing on these four areas:
- Patient access: Access to myeloma treatment around the world.
Health policy: How governmental organizations evaluate and value myeloma treatment, including new medicines, and how that affects patients with myeloma.
Clinical research: What studies are being undertaken, where the clinical trials are located, and who are the myeloma patients taking part.
Capacity building: Which organizations around the world will need to be more effective and will need to do more to serve myeloma patients.
- Attendees took part in a brainstorming session to discuss barriers and concrete steps that each of the GMAN Working Groups can take to make the envisioned future a reality for myeloma patients. Each working group will continue meeting online during the coming year to accomplish the tasks set at the Summit.
GMAN plans to hold an in-person meeting in Madrid, Spain, in the summer of 2024 to further improve outcomes for myeloma patients worldwide.
Susie Novis Durie Educational Grants, created to help member organizations of the IMF’s Global Myeloma Action Network (GMAN) increase education, awareness, and access to treatment. One of the biggest highlights of the Summit was naming the recipients of the 2022 Susie Novis Durie Grant.