representatives of myeloma advocacy

might help establish best practices for identifying, preventing, and treating myeloma.

On June 2, the 2023 Summit of the IMF’s Global Myeloma Action Network (GMAN) convened in Frankfurt, Germany. Yelak Biru (IMF President & CEO), a 27-year myeloma survivor, opened the Summit with a warm welcome and these words: “An African proverb says, ‘If you want to go fast, go alone. If you want to go far, go together.’ At this 10th Annual GMAN Summit, I want us to go far together, fast!” iStopMM is looking at the population of Iceland, where everyone over the age of 40 was invited to participate in the screening for precursors to myeloma and more than half of this population volunteered. The many diverse outcomes from iStopMM will benefit not only Iceland but the myeloma community around the world. Dr. Durie reviewed the iStopMM data and said that the research

Yelak spoke 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. “We believe that all parties involved in a patient’s journey have a responsibility to meet the expectations expressed in this document.” Yelak also talked about building the capacity of myeloma advocacy organizations across the globe, while noting that there is still much to do.

Dr. Brian G.M. Durie (IMF Chairman & Chief Scientific Officer), chair of the International Myeloma Working Group (IMWG), and creator of the Black Swan Research Initiative® (BSRI®), addressed the group via a prerecorded video. He reviewed recent data from the IMF’s iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) population-based screening study for monoclonal gammopathy of undetermined significance (MGUS) led by Dr. Sigurður Kristinsson (University of Iceland, Reykjavík).

Next, we reviewed the recent accomplishments of GMAN and its global mission 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. These are just some of our recent activities:

 Reaching 35 million people via social media during the 2023 Myeloma Action Month campaign.

 Translating myeloma statistics and graphs into multiple languages.

 Providing humanitarian aid to Ukraine and to the Republic of Turkey.

 Producing videos about myeloma patients’ treatment journeys.

It’s vital to bring people together from myeloma organizations worldwide so that they can share their challenges, develop solutions, and find ways to better serve the myeloma community at large.

Martine Elias, a member of the GMAN Steering Committee and the IMF Board of Directors, and the Executive Director of Myeloma Canada, shared new governance plans and structures that will help shape a more purposeful focus for GMAN, and help the organization achieve its goal to improve outcomes for myeloma patients globally by bringing world organizations and advocates together. One of the ways in which GMAN supports its mission and its member organizations is by awarding the annual Susie Novis Durie (SND) Grants that help patient advocacy organizations to elevate their work. Three grant recipients from 2022 presented their accomplishments:

 Viorica Cursaru (Myeloma Euronet Romania) shared how the SND Grant supported ensuring continuity of care of Ukrainian refugees who have myeloma and who fled to Romania