LOS ANGELES, May 25, 2023 (GLOBE NEWSWIRE) — Founded in 2013 by the International Myeloma Foundation (IMF), the Global Myeloma Action Network (GMAN) will hold its Annual Summit in Frankfurt Germany, from June 2-4, 2023.
A Media Snippet accompanying this announcement is available by clicking on the image or link below:
Over 30 advocacy leaders of myeloma patient organizations from 30 countries will be 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 Patient, President & CEO Yelak Biru will be leading the sessions.
The 3-day summit will include breakout sessions with GMAN Working Groups, working sessions, and panel discussions. Senior Physician and Head of the Multiple Myeloma Program at the Medical Clinic V, Heidelberg University Hospital and National Center for Tumour Diseases (NCT) Prof. Hartmut Goldschmidt, MD will conclude the summit as its Closing Keynote Guest Speaker.
Now on its tenth year, 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.
“While multiple myeloma continues to be an incurable disease, we have made remarkable progress in improving patient outcomes and quality of life. However, this progress is not experienced uniformly by all patients worldwide. GMAN Members must collaborate innovatively to shape the global agenda to accelerate our efforts towards improving access to equitable care, developing and providing actionable information, removing barriers to research, and ultimately finding a cure,” said 27-year myeloma survivor and IMF President & CEO Yelak Biru.
IMF Director of GMAN, Europe & Middle East Patient Programs Serdar Erdoğan recounts how GMAN has evolved as an organization in the past decade.
“Over the past 10 years, GMAN had a significant increase in attendance of myeloma advocates from different countries. During the 2022 GMAN Summit in Milan, our global network reached 42 myeloma organizations from 39 countries in 5 continents. As international collaborations among GMAN member countries developed, patients’ quality of life also improved rapidly,” he said.
Moving forward, he affirmed that GMAN will continue to evolve in terms of its global mission and goals by “improving access, increasing awareness, and building capacity.”
Martine Elias is a member of the GMAN Steering Committee, an IMF Board Member and the Executive Director of Myeloma Canada— “a grassroots charitable organization created by, and for, Canadians impacted by multiple myeloma” in 2005. Elias believes that she “can now help shape a more purposeful focus to GMAN, giving it a stronger vision and the opportunity to bring new members to the network.”
According to Elias, GMAN has helped her “learn and collaborate with those who represent myeloma patients in other countries to bring a stronger and united voice to the table.”
Myeloma Australia’s Manager of Programs and Services and GMAN Steering Committee Member Hayley Beer maintains that “being a GMAN member is integral to meeting their organization’s objectives” and that they “gain strength and insights from fellow organizations around the globe” which they can then share with their local communities.
Myeloma Australia has been with GMAN since 2013 and has contributed its 25 years of experience in setting up a nurse-led model—a move “which has inspired other countries to develop their own similar model of support and empowerment,” said Beer.
GMAN Steering Committee Member and Mijelom CRO (Myeloma Croatia) Director and Co-Founder Mira Armour has been representing her 12-year-old organization in GMAN since 2013. She affirmed that “only by working together with other myeloma patient organizations in Europe and on a global level can Mijelom CRO be effective locally.”
“Being available and supporting GMAN’s transformation” are what Armour considers Mijelom CRO’s greatest contribution. “To start the process of change, we need to understand global common challenges of the myeloma community. Advocating for access requires knowledge, we have always shared our resources and have given support to GMAN and its members in all meetings and projects,” she said of her organization.
Supporting Underserved Communities and Promoting Global Health Equity
GMAN’s foremost goal is to improve outcomes for myeloma patients globally by bringing world organizations and advocates together.
“It’s important to bring people together from organizations worldwide so that they can share some of the challenges, develop solutions, and suggest ways to better serve the myeloma community at large,” said IMF Director Erdoğan.
He cites how a majority of myeloma patients in underserved and developed countries do not have access to novel therapies. GMAN members are pulling resources, working together to ensure that all patients have access to much-needed drugs.
Elias (Myeloma Canada) believes that there is strength in numbers. “By working collaboratively, we increase our voice and footprint. That gives us more power to effect changes to improve the outcomes of the community we serve,” she remarked.
“We all have an overarching common goal: to support, inform, empower, and bring hope to the myeloma community. By banding together, GMAN members can pool resources, limit duplication, and learn from each other,” said Beer (Myeloma Australia).
“Sharing best practices, what works and what does not, speeds up progress. We have no time to waste. We are very interconnected—what happens in one place affects everyone everywhere,” said Armour (Mijelom CRO).
On what GMAN members consider as the biggest obstacles when it comes to access to care, medications, and therapies for myeloma patients around the world, Elias pointed out that decisionmakers on access to treatments “don’t see the value they bring to patients.”
“We have to do a better job in educating all stakeholders to appreciate the importance of innovation and the potential to transform patients’ lives,” Elias added.
“Although outcomes for myeloma patients have improved in the past 20 years, substantial disparities are still happening across developed, developing, and low-income countries. These disparities exist in both rural and urban settings, and among different races and ethnicities in the same country. They have been affecting patients’ quality of life and survival rates,” Erdoğan said.
He delves further into these disparities among myeloma patients from low- and middle-income countries as largely being caused by limited or delayed access to novel therapies, hospitals, and trained healthcare personnel as well as poor health insurance coverage.
Because Australia is such a vast country, even with a public health system that funds gold standard therapies for myeloma, disparities still exist when it comes to accessing standard of care therapies and clinical trials. “Geographic location can make traveling for infusions challenging and access to a hematologist is often limited in rural and remote areas,” said Beer.
For Armour, “the pricing and reimbursement mechanism in the European Union (EU) is not benefiting patients across Europe and neither does the treatment of patients by Protocol. We need to hear what is happening in countries where medical coverage is different and where guidelines are more flexible.”
The Susie Novis Durie Educational Grants
One of the biggest highlights of the GMAN Summit is the awarding of the Susie Novis Durie (SND) Educational Grants—created to help GMAN member organizations increase education, awareness, and access to treatment.
“Each year, our highly respected members create and share their unique and innovative projects for the SND Educational Grants. The selection process is conducted by the IMF’s Award Committee. Committee members have no interest in the outcome of the grant award,” explained Erdoğan.
He commends the SND Educational Grants for “supporting and making an impact on sustainable, innovative projects” of empowered organizations in different countries.
In 2021, Mijelom CRO was awarded an SND Educational Grant for “Pathway to Clinical Trials in MM in South East Europe (SEE).” Armour narrates the progress the project has made since then.
“The main achievement has been putting the lack of clinical trials (CT) in the region firmly on the healthcare and policy agenda. We are aware that this will not change overnight, CTs are expensive and complex. However, the fact that there are over 3,300 CTs in the world of multiple myeloma but almost none in the region (excluding Greece and the Czech Republic which have them) was a great shock. With an SND grant, we have started a conversation—this conversation is now out in the open and continues at all meetings. The project was started by workshops and meetings in focus groups and has led to our regional virtual meeting in April 2022. Much information was gathered and disseminated. Working with all stakeholders (patients, healthcare professionals, investigators, and regulators), we have defined key barriers and created an ongoing conversation on possibilities for better access to CTs in SEE,” said Armour.
To date, GMAN has funded 19 different projects through the SND Educational Grants. These innovative projects have been implemented in Spain, Portugal, Israel, Austria, and Sweden through practice digital toolkits and mobile programs for myeloma patients. Educational programs and activities have been empowering myeloma communities in South Korea, Finland, Norway, and Romania, shared Erdoğan.
2021 SND Educational Grant recipients from Australia, Finland, Norway, and Romania will be reporting on the outcomes of their projects prior to the announcement of the 2022 SND Grantees.
To learn more about the IMF’s Global Myeloma Action Network and the 2021 Susie Novis Durie Educational Grant recipients, visit the IMF website.
ABOUT THE GLOBAL MYELOMA ACTION NETWORK
In 2013, the International Myeloma Foundation (IMF) led the development of the Global Myeloma Alliance, which later became the Global Myeloma Action Network (GMAN) in 2014. 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.
ABOUT THE INTERNATIONAL MYELOMA FOUNDATION
Founded in 1990, the International Myeloma Foundation (IMF) is the first and largest global organization focusing specifically on multiple myeloma. The Foundation’s reach extends to more than 525,000 members in 140 countries worldwide. The IMF’s mission is to improve the quality of life of myeloma patients while working toward prevention and a cure. Its focus is on the key areas of research, education, support, and advocacy. Today, the IMF is on the cusp of finding a cure for myeloma, with 50+ cure-focused research projects in progress. The organization’s research arms, the Black Swan Research Initiative® and the International Myeloma Working Group®, unite global myeloma experts in the spirit of collaboration to improve treatment options for myeloma patients, and ultimately, find a cure. Additionally, the IMF conducts hundreds of educational seminars worldwide, maintains a world-renowned InfoLine, publishes more than a hundred myeloma-related booklets (translated into 19 languages), and helps support a network of 150+ support groups in North America. The IMF can be reached at (800) 452-CURE (2873). The global website is www.myeloma.org.
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LinkedIn: International Myeloma Foundation
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