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International Myeloma Foundation. 2 Scientific board Clinical conference Patient & Family Seminar Research Grants Program Advocacy Program Kyle Award.

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Presentation on theme: "International Myeloma Foundation. 2 Scientific board Clinical conference Patient & Family Seminar Research Grants Program Advocacy Program Kyle Award."— Presentation transcript:

1 International Myeloma Foundation

2 2 Scientific board Clinical conference Patient & Family Seminar Research Grants Program Advocacy Program Kyle Award Program IMF Latin America Nurse Leadership Board Asian Myeloma Network Black Swan Research Initiative IMWG Summit Barcelona Founded Bay Area Support Group IMF Japan GMAN Education Research Advocacy Support 1990 1992 1993 1994 1995 1997 2002 2004 2006 2011 2013 2015 2010 1992 The IMF has celebrated a ‘series of firsts’, launching exciting initiatives over the past 25 years.

3 International Myeloma Foundation IMF Global IMF Latin America Founded 2004 IMF Japan Founded 1997 Czech Myeloma Group Est 1996 Myeloma Australia Est. 1998 Myeloma Canada Est. 2005 KBCA Est. 2014 Miyelomla Yasam Est. 2014 In addition to strong U.S. presence, IMF has developed global partnerships. IMF Europe Founded 1999 IMF Affiliates Myelom Deutschland Est. 2016

4 International Myeloma Foundation Delivering Value Across 4 Distinct Pillars The IMF: Serving the myeloma community since 1990, across 4 pillars. 11 EDUCATION 22 SUPPORT 44 ADVOCACY 33 GLOBAL RESEARCH

5 International Myeloma Foundation Providing Education A core mission of the IMF is to provide thorough and cutting-edge education to the myeloma community. Myeloma patients are at the heart of what the IMF stands for, and we are honored to bring education to patients throughout their journeys. Education on Science and Therapies Education on Living with Myeloma

6 International Myeloma Foundation European Location Lazne Belhorad, Czech Republic Korsør, Denmark Paris, France Leipzig, Germany Vienna, Austria Heidelberg, Germany Budapest, Hungary Reykjavik, Iceland Rome, Italy Padova, Italy Napoli, Italy Tromsø, Norway Trondheim, Norway Oslo, Norway Madrid, Spain La Hulpe, Belgium Liptovsky Jan, Slovakia Lisbon, Portugal

7 International Myeloma Foundation Diagnosis: Tests: Initial Treatment Options: Supportive Care: Transplant: Yes or No? Response Assessment: Consolidation or Maintenance? Monitoring: Relapse: What to do? New Trials: Of the various resources found on Myeloma.org, “10 Steps to Better Care” has become an increasingly popular site, with over 793,126 page views! 11 22 33 44 55 66 77 88 99 1010 86,895views 215,960 views 159,960 views 38,711 views 49,928 views 18,665 views 16,869 views 29,653 views 159,077 views Information on Tests, Initial Treatment Options, and New Trials are amongst the top views.

8 International Myeloma Foundation Given the tremendous website traffic from countries around the world, we continue to invest heavily into providing free educational materials to patients, caregivers, and healthcare providers. Highlighted cells indicate locations where seminars were held

9 International Myeloma Foundation Global Myeloma Action Network (GMAN) The Global Myeloma Action Network (GMAN) is an advocacy initiative of the IMF. GMAN is a patient driven alliance of organizations and individuals who are active in the field of multiple myeloma. GMAN Mission GMAN Goals Improve the lives of myeloma patients around the world.  Empower patients through education and advocacy  Raise the profile and enhance the capabilities of patient advocacy groups around the globe.  Ensure access to treatments (novel and non-copy)  Improve patient outcomes through education and advocacy

10 International Myeloma Foundation Global Myeloma Action Network (GMAN) GMAN’s efforts to support patient advocacy organizations and improve the lives of myeloma patients over the next three years will be underpinned by three strategic pillars, under which all GMAN initiatives and programs will fall: Capacity Building: Facilitate best-practice sharing among member organizations and provide each with the information, skills and tools needed to support patient needs in their respective countries. Create a basic level of functionality for member organizations. Capacity Building: Facilitate best-practice sharing among member organizations and provide each with the information, skills and tools needed to support patient needs in their respective countries. Create a basic level of functionality for member organizations. Global Rating and Education: Create a three-tiered ranking system that defines the abilities of each country based on their medical systems ability to effectively diagnose, stage, treat, and support myeloma patients. To provide the most up-to-date materials to educate, and inform on treatment advances and other developments. Global Rating and Education: Create a three-tiered ranking system that defines the abilities of each country based on their medical systems ability to effectively diagnose, stage, treat, and support myeloma patients. To provide the most up-to-date materials to educate, and inform on treatment advances and other developments. Global Myeloma Awareness: Foster opportunities to raise the profile and level of awareness of myeloma globally through engagement of all stakeholders. Global Myeloma Awareness: Foster opportunities to raise the profile and level of awareness of myeloma globally through engagement of all stakeholders. 11 22 33

11 International Myeloma Foundation  Armenia  Argentina  Australia  Austria  Belgium  Canada  Croatia  Czech Republic  Denmark  Estonia  Finland  France  Germany  Hungary  Ireland  Israel  Italy  Malta  Norway  Paraguay  Poland  Portugal  Romania  Serbia  Slovakia  Slovenia  South Korea  Spain  Sweden  Switzerland  Turkey  UK  US GMAN Members

12 International Myeloma Foundation  GMAN Annual Summit – Vienna, June 2015  GMAN meeting – IMW – Rome, Sept. 2015  Sustainably working group  Upgraded online portal for greater member communication and access  Created a monthly newsletter for GMAN members  Established Susie Novis Educational Grant to provide funding support for 2016 educational programs of GMAN members  Conducted monthly calls with steering committee members to help inform GMAN’s strategic plan – members include Canada, Paraguay, South Korea & Romania  GMAN Annual Summit – Vienna, June 2015  GMAN meeting – IMW – Rome, Sept. 2015  Sustainably working group  Upgraded online portal for greater member communication and access  Created a monthly newsletter for GMAN members  Established Susie Novis Educational Grant to provide funding support for 2016 educational programs of GMAN members  Conducted monthly calls with steering committee members to help inform GMAN’s strategic plan – members include Canada, Paraguay, South Korea & Romania GMAN 2015 Successes 2015 was a very productive year for the GMAN organization, and the team is well-prepared to continue to deliver value in 2016.

13 International Myeloma Foundation  ASH Breakfast – Focus group comprised of GMAN members and industry partners to discuss broad topics affecting myeloma patients around the world.  Implement Susie Novis Educational Grant  GMAN Annual Summit – Copenhagen, June 2016  2 day summit focused on patient education, awareness, caregiver initiatives and access to treatments.  Continued emphasis on small group sessions to narrow topics.  Two full coalition webinar meetings  EU Parliament campaign to increase drug access  ASH Breakfast – Focus group comprised of GMAN members and industry partners to discuss broad topics affecting myeloma patients around the world.  Implement Susie Novis Educational Grant  GMAN Annual Summit – Copenhagen, June 2016  2 day summit focused on patient education, awareness, caregiver initiatives and access to treatments.  Continued emphasis on small group sessions to narrow topics.  Two full coalition webinar meetings  EU Parliament campaign to increase drug access GMAN 2016 Goals

14 International Myeloma Foundation The IMF Into the Future! The IMF is the Oldest and Largest myeloma foundation in the world and we are excited to continue to bring value to those we serve: Myeloma Patients The IMF looks forward to continued successes and collaborations with our Global partners in driving towards advancements in myeloma. 11 EDUCATION 22 SUPPORT 33 GLOBAL RESEARCH 44 ADVOCACY

15 International Myeloma Foundation Over 41 researchers in 16 Countries !


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