The Annual CML Horizons 2025 was held in Bucharest, Romania from 23rd to 25th May 2025. It brought together a global community of patient advocates, clinicians and leaders who are driving change for people living with CML. The meeting had over 100 participants from 55 countries.
Pramod George, Trustee & Jt. Secretary of FOM, represented FOM at the conference.
Day One
The day began with vibrant discussions in Regional Meetings, where advocates shared updates, regional challenges, and priorities for the year ahead. Nepal was recipient of project grant from CMLAN last year. Discussed on common issues and lack funds came up as a common factor across regions.
Parallel Sessions were held next and it ensured both new and experienced advocates got the most relevant information:
· CML 101 with Lisa Machado explored CML basics and understanding PCR results.
· CML 102 with Prof. Dragana Milojkovic covered treatment-free remission (TFR), and updated ELN & NCCN guidelines. (I attended this session.)
Official Opening
After a welcome lunch, the official conference opening was led by Adriana Covaciu, who warmly welcomed the global community to Romania.
Rod Padua reflected on the progress of our advocacy movement, followed by a heartfelt minute of silence led by Giora Sharf, honoring those we’ve lost. The opening concluded with an engaging CML Advocates Network update from Denis Costello.
Advocacy in Action: Workshop
Our First workshop series focused on Patient-Centred Care and Shared Decision-Making. Participants were supposed to attend any 2 of the 3 groups dived into engaging breakout sessions. (I attended 2 & 3)
· Patient Involvement in the Healthcare System with Cheryl-Anne Simoneau & Catherine Moura
· Shared Decision-Making: How to Make It Work with Lisa Machado & Jeff Lipton
· Peer Mentoring Programs with Nikki Yuill
Each session sparked insightful discussions on collaboration and empowerment.
The Second round of Workshops tackled key topics for building sustainable advocacy: (I attended 1 & 2)
· Building and Sustaining Organisations with Jan Geibler
· Succession Planning & Avoiding Burnout with Catherine Moura
· Expanding Disease Scope with Jana Pelouchová & Elo Mapelu
These peer-led conversations offered practical strategies for long-term success in advocacy.
The day concluded with a powerful session moderated by Lisa Machado, joined by Jeff Lipton and Brian Druker, reflecting on 25 years of progress in CML treatment and the crucial role of partnership between doctors and patients.
Later in the evening everyone joined for Reception & 25 years of TKI Celebration Dinner and Cake cutting in the Hotel.
Day Two
We began Day 2 of CML Horizons 2025 Hybrid meeting with a clear focus on the future. Kathy Redmond presented the CML Advocates Network Strategy, sharing progress to date and what lies ahead to strengthen our global impact.
Our first medical session for the day, “Innovations in CML Treatment,” chaired by Rod Padua and Toni Montserrat, offered cutting-edge insights from world leaders:
· Prof. Dragana Milojkovic presented on New Drugs and Emerging Therapies for CML
· Prof. Franck Nicolini explored the promise of Combination Therapies
· Prof. Brian Druker addressed Barriers to Cure
Group Photo in special 25years of TKI Tshirts was clicked during the coffee break
Our morning continued with Advocacy Session 3 , a showcase of innovative work across six continents. This session featured:
· Value-based healthcare law in Canada – Cheryl-Anne Simoneau
· National guidelines initiative from the Netherlands – Jenny Borst
· Patient participation in HTA in Brazil – Luana Lima
· CML Helpdesk in Tunisia – Nabil Belhassen
· Coaching program in Italy – Nicoletta Re & Michela Serramoglia
· School cancer education in Japan – Chitose Akiyama
Each presentation highlighted our community’s power to drive local solutions through global inspiration.
The afternoon’s Medical Session 2 focused on Treatment-Free Remission (TFR). We explored:
· What’s new in TFR research with Prof. Franck Nicolini
· Barbara Meunier discussed psychological support during TFR
· Nigel Deekes provided a heartfelt patient perspective on treatment restart
· Jeff Lipton & Brian Druker debated TFR vs. Quality of Life in today’s CML landscape. Two perspectives. One powerful conversation.
We closed the day with Advocacy Session 4 on Quality of Life in CML.
Jan Geibler shared insights on integrating Patient Experience Data (PED) to shape more responsive CML advocacy in his talk titled: How do we incorporate Patient Experience Data into our advocacy?
Dr. Fatima Al Sayah joined us online to explore tools for measuring Patient-Reported Outcomes (PROs) in CML.
Denis Costello presented findings from our Patient Preference Study, giving advocates a clearer roadmap to shape services that align with real needs.
Catherine Moura closed the session introducing the new CML-specific Quality of Life scale to help us measure what truly matters.
Another inspiring day at CML Horizons 2025, we’re reminded of the strength that comes from connection, collaboration, and a shared mission.
We then joined for the Off site Dinner. CML Advocates Network Award was introduced for the 1st time and the 2025 recipient was declared as Dr. Andreas Hochhaus.
Day Three
As we wrapped up the final day of CML Horizons 2025, the atmosphere was filled with energy and gratitude
A Moment of Honour
We began with a powerful message from the 2025 CML Advocates Network Award recipient Dr. Andreas Hochhaus – an inspiring tribute to advocacy, commitment, and community impact. Their words reminded us why we gather each year: to learn, connect, and make a difference.
Our final medical session of the conference tackled some of the toughest issues in CML care:
· Jeff Lipton helped us identify when TKI switching is necessary
· Dragana Milojković shared emerging approaches to tackle resistance
· Franck Nicolini unpacked real-world insights on drug interactions and comorbidities
· Ekaterina Chelysheva bravely addressed the complexities of pregnancy and TKIs
A robust Q&A session wrapped it all up, sparking lively dialogue on practical solutions.
Conducted by Yigal Aviv, our final advocacy session Practical Tools in Patient Advocacy explored how AI tools can enhance the work we do every day. From automating tasks to amplifying reach, this hands-on session gave us the practical skills to strengthen our impact in the digital age. A very useful tool and should be used to its full potential to help us in our regular advocacy work. Provide it with data and ask for solution
The conference closed with reflections from the regional meetings and heartfelt farewells.
The Best Poster Award was announced by Giora Sharf recognizing outstanding work from the patient advocacy community.
· 1st place CML Tunisia
· 2nd place KBDCA South Korea
· 2nd place Hematon Netherlands
· 3rd place Esperantra Peru
Congratulations to the winners and to all who presented insightful, creative posters!
As we ended this inspiring 3-day journey, we left empowered, better connected and more determined than ever – keep advocating, innovating, and supporting one another.
Insights :
· No point advocating for some procedures / process that is not easily available for us
· Trails happening in many places, but Non in our region.
· Asciminib is now the closest to perfect medications
· Quality of life is the prime goal of a patient entering treatment for CML. TFR is not the goal
· TFR is a Joint decision of the Patient – Family – Doctor once they are all on the same page, Based on the supporting clinical records.
· AI to be used in daily Advocacy work. Using of technology and resources is the need of the hour
Learnings for FOM :
1. Need for Social presentation / representation in Echoing our Voices for changes and our needs.
2. Joining hands with other NGO’s in our region, Reduce duplication and increase Capacity and capability. Joint action to address common problems. Making ourselves visible amidst the crowd.
3. A CML Helpdesk India Number
4. Cancer Education sessions in Schools by local CCL’s. Reach out to schools, Share awareness and also make our presence felt.
5. Our succession plan – Need to start working on it.
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