2025 GMAN SUMMIT
June 7 & 8, 2025
Milan, Italy
THANK YOU TO OUR SUMMIT SPONSORS
8:30 – 08:40 Welcome & Kickoff
Serdar Erdoğan, Diane Moran
08:40 – 10:00 Susie Novis Durie Grants
Serdar Erdoğan
10:00 – 10:30 Industry Partner Presentation
10:30 – 10:45 Coffee Break / Poster Session
Canada, Croatia, Czechia, Denmark, Norway, Portugal
AGENDA
SUNDAY JUNE 8, 2025
10:45 – 11:15
11:15 – 12:15
Industry Partner Presentation
How to Best Put Forward Our Relations with Industry? Interactive Discussion with Pharma
Martine Elias, Michelle Oana, Virginie Delwart, Philippe Gehanno, Wafae Iraqi, Heidi LaPensee, Jack Lambert Watkins
12:15 – 12:30
Closing Remarks
Mira Armour
12:30 – 14:00 Farewell Lunch and Departures
OPENING & WELCOME
Serdar Erdoğan, IMF Director, Global Myeloma Action Network, European & Middle Eastern
Patient Programs & Diane Moran, RN, MA, EdM,
IMF CEO (Interim) & Senior VP, Strategic Planning
SUSIE NOVIS DURIE GRANTS
Serdar Erdoğan, IMF Director, Global Myeloma Action Network, European & Middle Eastern Patient Programs
CROATIA, DENMARK, ISRAEL, ROMANIA
ANNOUNCEMENT OF 2025 SND GRANT RECIPIENTS
CROATIA
Compassion without Boarders
1. Inspiration & Background
MijelomCRO is founded by family Tudor Armour in 2011., to honour Kate Tudor.
Mijelom CRO supports MM patients in the region since 2013, and intensely in the last six years.
Compassion Without Boarders builds on existing cross-border partnerships and efforts.
Kate Tudor and grandson Neil in Zagreb at second relapse in 2008.
FACTS:
•
“Where you live could determine HOW or even IF you live.
• There is a global post/ zip code lottery of outcomes and value.
• Accessing
care can be a major risk for patients”
by Eduarno Pisani and Matt Hackey, AI.Can, OECD (2024), Beating Cancer Inequalities in the EU: Spotlight on Cancer Prevention and Early Detection, OECD Health Policy Studies, OECD Publishing, Paris, https://doi.org/10.1787/14fdc89a-en.
Where you live could determine HOW or even IF you live.
• Cancer mortality rates vary 1.6‑fold across countries, and by up to 37% between regions within a country
•Not everyone has the same risk of dying from cancer, even within the same country. Cancer mortality rates differ by up to 37% between regions in Romania, and by at least 30% between regions in France, Germany, Poland and Spain.
•OECD (2024), Beating Cancer Inequalities in the EU: Spotlight on Cancer Prevention and Early Detection, OECD Health Policy Studies, OECD Publishing, Paris, https://doi.org/10.1787/14fdc89a-en.
Apart from vast country differences in the use of immunotherapies, the analysis (Hofmarcher et al.,2019[18]) also showed that large differences are apparent in cancer types that have seen the recent introduction of many new medicines, such as multiple myeloma and prostate cancer. In contrast, there are much smaller differences in the use of certain older medicines – such as trastuzumab in breast cancer – yet even for these medicines there is a tendency of lower utilisation in Central and Eastern Europeancountries compared to other countries.
Thinking Outside the Box to Improve Access Croatian programme in the region
Patients from Sarajevo and Zagreb meeting for the first time F2F after a virtual call
The reality snapshot
“Worry about the diagnosis … not about where to get the medicine”
Slavko from Sarajevo (age 71), diagnosed 2023., VRD, early relapse, DCd from donation, (from 60% plazma cells to 1-2%)
I am grateful to you for your initiative, which made recommended treatment possible in my local hospital
Accessing care can be a major risk for patients, so we…
1. work with innovative and generic pharma companies registered in EU and in Croatia
2. collaborate with hematologists in each country for every patient
3. create a network of trusted pharmacies
Goals: (primary endpoints )
- to support patients and carers at diagnosis and treatment, - to lower financial burden and toxicity, - to make lenalidomide and bortezomib available at hospitals.
Outcome 1: Access to safe medicine with reduced financial toxicity
• Information on this programme has been made known to healthcare professionals in BiH ( Zenica, Tuzla, Sarajevo, Mostar, Trebinje, Banja Luka).
• Avg. 50 patients/year supported since the start of the programme in 2019.
• 2023: 52 patients with generic drugs (R, V and T, VAD, M, Bendamustine).
• 2023: advocated for compassionate scheme for D and K in BiH (15 patients are on the programme now). THANK YOU all who made this possible!
• 2024: 80 patients supported with lenalidomide in BiH, 15 with thalidomide.
• 2024: dedicated telephone helpline and email
• Partner pharmacies in Croatia from 5 to 8.
• New distribution within BiH started from January 2025.
(9 pharmacies, one in each major town) – procedure put in place so that same discounted price is charged.
• Generic bortezomib and lenalidomide are now available in hospitals free of charge /all patients inBiH / 30 patients in RS.
- Goals (primary):
- to support patients and carers at diagnosis and treatment
- to lower financial burden and toxicity
- to make lenalidomide and bortezomib available at hospitals.
Key Advocacy Activities (secondary endpoints ):
Identifying access barriers
- Raising awareness of patient hardships and the CWB Initiative: Presented and discussed the real world challenges faced by patients and families at advocacy & stakeholder meetings:
• MijelomCRO MM Multistakeholder Conference Split (Oct 2024);
• International Conference on Immunotherapy and CAR-T cell Therapies Zagreb, Feb 2025;
• Mijelom Srbija MM Conference, Belgrade (March 2025);
• Mijelom in BiH MM Conference, Sarajevo (April 2025).
- European School of Oncology - Improving Cancer Outcomes and Leadership Couse, Zagreb (May 2025).
Presentation: Improving outcomes for MM patients - Compassion Without Borders initiative as part of Breakout session with expert panelists feedback
INTERESTING FEEDBACK
Testimonies
• "My mother was diagnosed and treated in Sarajevo. We couldn’t get the medicine locally, they never head of the drug we needed. The haematologist gave me contact number for MijelomCRO. What a relief that was… not to search for medicine across Europe and Turkey. We are forever grateful."
• — JK, Bosnia and Herzegovina
• "We were told there were no more options for my father. But MijelomCRO helped us get the medicine the doctor recommended and he is still with us now."
• — Family of RK, Kosovo
• "Being diagnosed with MM was terrifying. Talking to someone like you, gave us hope."
• — DA, Banja Luka, RS
Thank you from MijelomCRO team to Susie Novis Durie and GMAN!
Hvala!
DENMARK
Living with Multiple Myeloma
Susie Novis Durie Grant 2024
Acknowledgemnts
A special thank for the support through the Susie Noris Grant, without which this project could not have been carried out.
Thanks to the IMF for many years of continuous support to the Danish Myeloma Association and for the support and inspiration we get through GMAN
Dansk Myelomatose Forening –
25th Anniversary
• Celebrating 25 years of support for myeloma patients.
• Currently has 1,200 members in Denmark.
• Represents approximately 34% of myeloma patients in the country.
• Focus on raising awareness and providing resources.
• Aims to improve the quality of life for patients and families.
Focusing on Life with Multiple Myeloma
The seminar aims to address life with myeloma. Vi originally planned dedicated breakout sessions for patients and caregivers. Encouraging shared experiences and support.
Identifying Challenges in Living with Myeloma
• We planned the following process: A qualitative study prior to the final determination of the seminar’s content. The purpose was to identify the greatest challenge for patients and for relatives, respectively, in order to determine the content of the two sessions on the second day.
The perspective of the relatives
For the relatives, one topic stood out: their loved one’s cognitive challenges. For the patients, there was a broader range of challenges, including side effects of the disease and treatments, neuropathy, and knowledge about and access to new treatment options, among others.
RESPONSES HIGHLIGHTED DIFFICULTIES IN COPING WITH EVERYDAY LIFE. COGNITIVE CHALLENGES WERE A PROMINENT CONCERN FOR CAREGIVERS/RELATIVES.
TERMS LIKE 'CHEMO BRAIN' AND 'MENTAL FOG' WERE FREQUENTLY MENTIONED.
Joint Session on Cognitive Challenges
When we decided that the relatives’ breakout session should focus on cognitive challenges, there was an overwhelming interest from the patients to join this session as well. We therefore had to change the plan and hold a joint session on day two for both patients and relatives. Theme: Cognitive challenges.
Relatives showed strong interest in cognitive challenges.
Patients expressed a desire to join the breakout session.
The plan was revised to accommodate both groups.
Agenda for Day Two three parts
• Practical exercise in SMART-training
• Lecture on the SMART Training model and theory.
• Lecture on cover cognitive challenges post-cancer treatment with focus on coping models for patients and their relatives.
Research Questions
• Can a seminar like this influence how patients and relatives experience cognitive challenges?
• Does it make sense to supplement a general introduction to existing knowledge and general advice on cognitive difficulties with practical exercises based on a model such as SMART training?
• Do participants, when asked six months after the seminar, feel that it has made a difference?
Does this lead tho thoughts about what we, Dansk Myelomatose Forening, can add to what we are already doing – or to change this?
Methodology Overview
The method involved quantitative analysis using two surveys.
Survey 1 focused on cognitive challenges before the seminar.
Survey 2 assessed changes six months post-seminar.
Findings
Apx. 210 members participated in the seminar and apx. 200 participated day 2.
471 patients and caretakers/relatives answered Survey 2. Of these, 111 attended day 2 of the seminar = more than 50% responded.
Of the 110, a total of 86 have either directly applied what they gained from the seminar, now think differently about cognitive challenges, or have subsequently participated in, for example, SMART Training.
A few of the findings
There is a very clear trend: the patients who chose to participate had significantly greater cognitive challenges than the average in both Survey 1 and Survey 2.
There was also a clear tendency: those who were most challenged experienced the greatest benefit from participating in the practical exercises and the two lectures on day two.
The report
A report has been prepared outlining the background and providing an analysis of the surveys.
It is not a formal scientific thesis but rather a review of the methods, a presentation of the results, and the lessons learned — including the necessary caveats regarding what conclusions the methods allow.
ISRAEL
Listening to Myeloma: Series of Podcasts
A comprehensive podcast series designed to support, inform, and connect the myeloma community in Israel through shared experiences and expert insights.
Varda Shoham, Amen Organization , ISRAEL
About the Podcast
Podcast Series
Why This Podcast ?
Emotional Support
Address the feelings that come with diagnosis .
Information Access
Deliver expert knowledge in digestible segments .
Practical Guidance
Offer real-world advice for daily challenges .
Podcasts provide an intimate, flexible format. Listeners can engage at their convenience .
Our Vision
Empower
Equip patients with knowledge and confidence to manage their journey .
Support
Create a space where concerns and experiences can be shared openly .
Community
Foster connections among patients, caregivers, and healthcare providers .
Target Audience
Family Members and Caregivers
Those supporting loved ones through treatment and recovery.
Newly Diagnosed Patients
Younger Patients (under 50)
Facing unique challenges related to career, relationships, and family planning .
Navigating the initial shock and learning curve of myeloma . Advanced Patients
Managing ongoing treatment and maintaining quality of life .
Podcast Format
Production
• Audio recording
• Optional video component
• 20-30 minute episodes Language
• Hebrew episodes
• Arabic episodes Distribution
• Organization website
• Spotify
• YouTube
• Apple Podcasts
Sample Topics
For Caregivers
Preventing burnout, setting boundaries, real-life success stories
.
For Younger Patients
.
Maintaining relationships, work-life balance, family planning
For Newly Diagnosed
.
First steps after diagnosis, understanding treatment options
For Advanced Patients
Quality of life strategies, building resilience, legacy planning .
Production Plan
Planning (Month 1)
Recruit guests and develop content outline .
Production (Month 2)
Record episodes and complete editing process .
Launch (Month 3)
Distribute content and implement promotion strategy .
Evaluation
Collect listener feedback and adjust future episodes .
Success Measures +1000
Yearly Listeners
Target audience reach within first year. 85%
Satisfaction Rate
Positive feedback from community members.
30%
Awareness Increase
Growth in organization visibility .
Total estimated budget: 80,000 NIS (approximately $20,000) for 11 poscasts
List of Podcast :
• What is autologous transplantation – a doctor who implants and a patient who has undergone a transplant
• Caregiver's journey – from the diagnostic process until after the transplant – a social worker and a caregiver
• How to Prepare for a Bone Marrow Transplant – Transplant Coordinator Nurse and Patient.
• Vaccinations and Infection Prevention – Infection Specialist and Hematologist
• Coping with smoldering myeloma – hematologist and patient
• Diagnosis and first-line treatment – hematologist and patient
• Tools for Emotional Coping with Myeloma - Hematologist and Patient
• Treatment of Myeloma by CART – Patient and Hematologist
• Treatment of Myeloma by Bispecific Antibodies – Patient and Hematologist
• What is Myeloma – Hematologist - in Arabic
• Myeloma Patient's Journey – Patient - in Arabic
https://open.spotify.com/show/4z39LRRSNBgd4Sps4ji5Mu?si=fc6fcad78 7ee4438
https://www.youtube.com/playlist?list=PLGTjefcPHJiLPD8vQ1WGDRRR oNtm4of-5
Thanks to GMAN for the contribution‑ and the collaboration for this project
Content Development Promotion
ROMANIA
MYELOMA EURONET ROMANIA
Viorica Cursaru
President
BIG THANK YOU!
• IMF GMAN FOR THE GRANT
• ERIK AERTS, FORMER EBMT PRESIDENT
• UNIVERSITY HOSPITAL OF ZURICH
Myeloma Euronet Romania was founded in 2006
GOALS AND OBJECTIVES
• Advocate for a far access to novel treatment
• Dissemination of information for the empowerment of the patients
• Advocacy at the national and EU level for a harmonized health system in Europe
• Capacity building of the nurses
TRAINED OVER 400 HEMATOLOGICAL NURSES
• Timisoara in 2012. The workshop was attended by 43 nurses.
• Bucharest 2013 – 2017, Fundeni Hospital, University Municipal Hospital, Colentina Hospital, Institutul de
WHY DID WE ASSUME THIS TASK ?
• The European Health Report produced at every 3 years as a flagship publication by the WHO Regional Office for Europe HIGHLIGHTED THAT PIB ALLOCATION OF HEALTH BY ROMANIAN GOVERNMENT AMOUNTS TO 5.75
As compared to other EU Member States OUTLINED BELOW
28 - 30
NOVEMBER 2024
UNIVERSITY MUNICIPAL HOSPITAL
IN BUCHAREST
• Regional Workshop
• Participants from
• Number of Participants: 40
• Lecturers
CREDITS ISSUSED BY THE MINISTRY OF
HEALTH
• 40 medical assistants who participated in this training received diplomas, based on which the Ministry of Health will grant them the necessary credits to work in the Transplant Department.
TAKE HOME BENEFITS PATIENTS BENEFITS
FOR THE NURSES
• Professional Proficiency in administering the drugs and the required assistance for the transplant patients
• Ability to communicate with the patients and clarify issues of concern in the absence of the doctors
• Better accreditation by the Ministry of Health
• Optimized QOL
• Understand their medical problems and clarifications of their concerns
• Relief of carers’ concerns
• Participation to the medical process by providing accurate feedback
2025 SUSIE NOVIE DURIE GRANT RECIPIENTS
ARMENIA
ARMENIAN HEMATOLOGY ASSOCIATION
“Myeloma Armenia 2025/26 – National Educational Seminars on MM”
The project aims to bring together medical professionals, patients, caregivers, NGOs, and policymakers to raise awareness of multiple myeloma in Armenia, highlight emotional and psychological needs of patients, and facilitate collaboration for better care, earlier diagnosis, and support services. The objective is to host one-day national education seminars 6 times during the year in Yerevan to feature expert sessions, patient stories, and to train healthcare professionals in delivering psycho-social support.
KENYA
AMPATH – The Academic Model Providing Access to Healthcare “Expanding Early Detection, Access, and Support for MM Patients in Kenya”
This project outlines a time-bound strategy to transform MM care in Kenya by equipping frontline health workers, raising community awareness, and using digital tools to reduce care barriers. The overall goal of strengthening patient support services is to enhance the quality of care provided to MM patients, leading to improved health outcomes and better patient experiences. The intervention will be expanded through a Training of Trainers (TOT) model, ensuring sustainable knowledge transfer. Collected adherence data will be shared with the National Cancer Control Program and the National Cancer Institute of Kenya to inform national guidelines. In collaboration with the GMAN, the program aims to share insights, learn from member partners, and contribute to GMAN's resource library for global adaptation.
POLAND
CARITA FOUNDATION
“In The Blood” – A Quarterly Magazine for Myeloma Patients & Carers
The primary objectives of the program are: (1) Disseminate reliable and up-to-date knowledge about multiple myeloma, including modern diagnostic methods, treatment options, clinical trials, and patient care, in an accessible and patient-friendly format, (2) Foster a sense of community among people affected by myeloma—patients, caregivers, families, and professionals—by sharing personal stories, expert interviews, and initiatives that support peer connection. (3) Increase awareness of the Carita Foundation’s initiatives, including events, support groups, educational programs, and advocacy efforts that directly benefit the myeloma community. (4) Promote inclusivity in access to information, by reaching individuals who may not use digital platforms—particularly elderly patients or those in digitally excluded areas—through quarterly publication.
SERBIA
ASSOCIATION OF MYELOMA PATIENTS SERBIA
“Knowledge Unites the CoMMunity”
The aim of this project is to empower the multiple myeloma community in Serbiaincluding both patients and general practitioners - by enhancing awareness, knowledge, and communication around the disease. Through a series of targeted outreach activities (educational workshops and panel discussions), the organization seeks to address the knowledge gaps that hinder early diagnosis and quality care, especially in smaller and underserved towns. The ultimate goal is to reduce disparities in care and to empower those affected by this rare but serious condition — regardless of where they live. In one word, they want to send the message that we are all part of the same coMMunity fighting against myeloma.
INDUSTRY PARTNER PRESENTATION SANOFI
COFFEE BREAK / POSTER SESSION
CANADA, CROATIA, CZECHIA, DENMARK, NORWAY, PORTUGAL
THANK YOU TO OUR SUMMIT SPONSORS
HEALTH POLICY
INDUSTRY PARTNER PRESENTATION
PFIZER
HOW TO BEST PUT FORWARD OUR RELATIONS WITH INDUSTRY?
Martine Elias, CEO Myeloma Canada Board Member of the IMF
Member of the MPe Community Advisory Board
Chair of GMAN, Michelle Oana
Panelists
Wafae Iraqi
Johnson & Johnson
Virginie Delwart Regeneron
Jack Lambert Watkins Pfizer
Philippe Gehanno
The Binding Site
Alicia O'Neill GSK
THANK YOU TO OUR SUMMIT SPONSORS
CLOSING REMARKS
Mira Armour, CEO, Mijelom CRO
LUNCH
VERANDA RESTAURANT
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
IMF Core Values:
These are the core values we bring to accomplishing our mission each day.
Patient Centric
The patient experience is the focus of everything we do. Every interaction is an opportunity to establish a personal connection built on care and compassion which is the basis for continued support.
Respect All
As a team, we value honesty and transparency while creating a culture of mutual respect. We foster a myeloma community built on sincerity, authenticity, and kindness.
Excellence and Innovation
We value accountability, personal responsibility, and a steadfast commitment to excellence. We respect the legacy and reputation of our organization while seeking new solutions and advancements to improve outcomes, quality of life, and access to the best available resources for everyone impacted by myeloma.
Honor differences
We recognize each team member's skills and talents through collaboration and cooperation. Our programs aim to celebrate and support the diversity of our patients and their communities.
