CML AdvocatesNetwork

CML Advocates Network: Network of 128 chronic myeloid leukemia patient groups in 93 countries.
#CML #Leukemia #CureCML #PatientAdvocacy

[CML AdvocatesNetwork @cmlnet]

💡Strong advocacy starts with a clear strategy.
Learn how to:
✅Define your mission
✅Measure your impact
Free on-demand course open to all advocates & caregivers!
Start now: https://t.co/uXLNZ8iFZi
#BCPAA #PatientAdvocacy #BloodCancerSupport #CML #Leukemia #FreeTraining #PatientSupport #LepafAcademy #BloodCancerPatientAdvocates #CronicCancer #LePAF #OnlineAcademy #HematologocialMalignancies #CMLAdvocatesNetwork #BloodCancer #Healthcare #Nonprofits #Advocacy #Learning #Healthadvocacy

[CML AdvocatesNetwork @cmlnet]

We’re excited to announce that the CML AN led Patient Preference Study has been nominated as a finalist for the Patient Engagement Awards at the upcoming Patient Engagement Open Forum in Seville next week! 🎉

This recognition highlights the importance of ensuring patient voices are at the center of research, healthcare innovation, and decision-making. We are proud to see this collaborative work recognized among leading patient engagement initiatives from around the world.

Read more about the awards here: https://t.co/a2T5NDgm2q

We look forward to joining the global patient engagement community in Seville and continuing to advocate for meaningful patient involvement in CML research and care.

#PatientEngagement #CML #PatientAdvocacy #PatientVoice #HealthcareInnovation #PEOF2026 #MadeWithPatients

[CML AdvocatesNetwork @cmlnet]

Ever heard of synthetic data?
Synthetic data is generated using real patient data but does not identify individuals, helping to protect privacy while enabling researchers to develop better tools, improve healthcare, and accelerate innovation. However, it still relies on real-world data and cannot fully replace patient experiences.

As part of the SYNTHIA project, a European initiative focused on making synthetic data safer and more reliable in healthcare, a survey has been co-designed with the patient community to understand perspectives and acceptance across Europe. “Your Voice Matters: European Survey on Synthetic Data in Healthcare” aims to capture expectations and concerns so future guidelines reflect real patient needs. The survey takes 12–15 minutes and is available in English, Spanish, German, Dutch, and French – your input will help shape the future of healthcare!

[CML AdvocatesNetwork @cmlnet]

We are proud to share that our cofounder @jangeissler, has been awarded the Cross of Merit of the Federal Republic of Germany by Frank-Walter Steinmeier. 🇩🇪

This prestigious recognition honors Jan’s outstanding commitment to patient advocacy, international collaboration, and improving the lives of people living with CML and other blood cancers around the world.

Through years of dedication, leadership, and community building, Jan has helped empower patient organisations globally and strengthen the voice of patients in healthcare and research.

Congratulations, Jan, on this well-deserved honor — and thank you for your inspiring contribution to the global patient community. 👏

#PatientAdvocacy #CML #BloodCancer #Healthcare #PatientVoice

[CML AdvocatesNetwork @cmlnet]

📖 A special new edition of CancerWorld marks an important milestone: 25 years of TKIs in CML and the extraordinary transformation they brought to the lives of people living with Chronic Myeloid Leukemia.

From a once life-threatening diagnosis to a condition many people can successfully manage long term, this special issue reflects not only on scientific progress, but also on the global effort to improve access to treatment, patient support, and equity in care.

Developed in collaboration with @themaxfndn Foundation, the issue brings together voices from across the worldwide CML community — including clinicians, researchers, patients, and advocates — highlighting both the achievements and the challenges that remain.

📄 Read the special issue here: https://t.co/YWNTzpinbz

#CML #WorldCMLDay #TKIs #CancerAdvocacy #CancerWorld #Leukemia #CMLAwareness

[CML AdvocatesNetwork @cmlnet]

Working on our next course: ‘Fundraising & Financial Sustainability for Blood Cancer Patient Advocacy Organisations’
What practical fundraising challenges are you facing in your advocacy work?
We want real-life scenarios and questions where you’d value fundraising advice, not broad fundraising topics.
Share your questions below 👇
https://t.co/j3c6uBZB0B

#PatientAdvocacy #Fundraising #BloodCancer

[CML AdvocatesNetwork @cmlnet]

📢 New in CML care

The treatment landscape of chronic myeloid leukemia continues to evolve. In response, the European LeukemiaNet has brought together leading experts to review the latest evidence and update its guidance.

The “European LeukemiaNet 2025 recommendations for treating chronic myeloid leukemia,” published in July 2025, reflect the most recent advances in CML management and patient care.

👉 Learn more: https://t.co/o9htPabjGZ

To make this important information more accessible, the CML Advocates Network has once again developed a patient-friendly summary of the ELN 2025 Recommendations—helping patients and advocates better understand what these updates mean in practice.

Empowering patients starts with access to clear, understandable information.

#CML #Leukemia #PatientAdvocacy #ELN2025 #CancerCare #HealthLiteracy

[CML AdvocatesNetwork @cmlnet]

📢 We are sharing an important call to action from @WECANadvocate:

“Cancer Cannot Wait: Safeguard Health as a Standalone Priority in the EU Budget.”

👉 Read the open letter: https://t.co/qhm6j4x4bc

Europe is entering a cancer crisis, and the EU budget must not look away.

Each year, 2.7 million people in the EU are diagnosed with cancer, and 1.3 million lose their lives. Yet current EU budget discussions risk downgrading health as a priority, with no guaranteed funding for cancer.

As discussions on the EU Multiannual Financial Framework (2028–2034) continue, this call remains urgent.

We echo the call to Members of the European Parliament to:

✔️ Protect health as a standalone budget priority
✔️ Safeguard long-term investment in cancer
✔️ Ensure that competitiveness supports health outcomes, not dilutes them
✔️ Vote with full awareness of the consequences

👉 23 organisations have already endorsed this letter. We encourage the community to engage, support, and share.

📧 To countersign, send your logo to [email protected]

This is a defining moment for Europe’s health policy.

#EUBudget #MFF2028–2034 #EUHealthPolicy #CancerPolicy #HealthFunding #PublicHealth #HealthAdvocacy

[CML AdvocatesNetwork @cmlnet]

🚀 New course now live!
“Strategic Planning Essentials for Blood Cancer Patient Advocacy Organisations” is now available on demand.
✔️Free
✔️Self-paced
✔️Certificate included
Start anytime, anywhere 👇
https://t.co/uXLNZ8iFZi
#BCPAA #PatientAdvocacy #BloodCancerSupport #CML #Leukemia #FreeTraining #PatientSupport #LepafAcademy #BloodCancerPatientAdvocates #CronicCancer #LePAF #OnlineAcademy #HematologocialMalignancies #CMLAdvocatesNetwork #BloodCancer #Healthcare #Nonprofits #Advocacy #Learning #Healthadvocacy

[CML AdvocatesNetwork @cmlnet]

Join @themaxfndn for a webinar on May 11 about the 25th anniversary of an innovative medication for chronic myeloid leukemia (CML)! Experts will discuss the birth of targeted therapy and the ongoing work to ensure people living with CML have access to the treatment they need. You’ll hear from:

🧡Brian Druker, president of the OHSU Knight Cancer Institute and the lead developer of the medication
🧡Jan Geissler, cofounder of the CML Advocates Network
🧡Pat Garcia-Gonzalez, Max CEO
🧡Paula Boultbee, Max board member
🧡Dr. Jerald Radich, Max board member, professor and clinical researcher at Fred Hutch

Sign up now➡️https://t.co/52orMjYWxF

#CancerInnovation #ChronicMyeloidLeukemia #CancerTreatment #TheMaxFoundation

[CML AdvocatesNetwork @cmlnet]

A very encouraging new publication on Treatment-Free Remission (TFR) in CML in low- and middle-income countries.

This work, led by @themaxfndn Foundation Max Foundation, reflects real-world outcomes from patients across Armenia, the Dominican Republic, El Salvador, Ethiopia, Honduras, India, Kenya, and Paraguay.

What stands out is that this goes beyond access to treatment, it brings together diagnostics, monitoring, and patient support to make TFR achievable in resource-limited settings.

A meaningful step forward in reducing inequities in CML care, and a strong example of what coordinated, patient-centred approaches can achieve globally.

#CML #TFR #GlobalHealth #HealthEquity

🔗 https://t.co/7vl9rBAP4j

[CML AdvocatesNetwork @cmlnet]

At the end of last year, the CML Advocates Network held its first Community Advisory Board (CAB) meeting with Enliven Therapeutics bringing together patient advocates from six world regions and the Enliven team for an open, strategic dialogue.

The focus was making sure the patient voice shapes drug development from the very beginning. We had a meaningful conversation with key topics discussed such as Enliven's CML programme and ELVN-001, a highly selective BCR::ABL inhibitor showing encouraging early results in heavily pre-treated patients, Phase 3 trial design, Patient-reported outcomes (PROs) and quality of life measures and clinical site selection and patient recruitment and retention strategies.

Read the summary here: https://t.co/sYIEHCDXJK

We look forward to continuing this partnership with Enliven in 2026. 💚

[CML AdvocatesNetwork @cmlnet]

‼️Important Update: CML Horizons 2026 Postponed‼️

Following careful discussion, the CML Advocates Network Steering Committee has decided to postpone CML Horizons 2026 in Tbilisi, Georgia, due to the current situation in the Middle East and the impact this is currently having on international travel routes and airport operations across the region.

While Georgia itself is not involved in the conflict, travel across neighbouring regions has been affected, which may create challenges for participants travelling from different parts of the world.

For this reason, the Steering Committee felt it was most responsible to postpone the meeting so that our global community can travel with greater certainty.

The conference will now take place on:
Friday 13 – Sunday 15 November 2026
Tbilisi, Georgia

If you have already registered for CML Horizons, please keep an eye on your inbox. An email from Lidija Pecova will be sent shortly explaining the details and next steps.

Thank you for your understanding and continued support. We very much look forward to welcoming everyone to Tbilisi later this year.

[CML AdvocatesNetwork @cmlnet]

On Rare Disease Day, we join the global movement to raise awareness and stand with all people living with rare diseases.

As a network dedicated to chronic myeloid leukemia (CML), we understand the power of research, collaboration, and strong patient communities. We extend our solidarity beyond CML to every individual and family navigating life with a rare condition.

Every rare story matters. Every voice counts. Every patient deserves access to timely diagnosis, effective treatment, and quality care — regardless of where they live.

Together, we advocate for equity, inclusion, and hope for the entire rare disease community.

#RareDiseaseDay #RareIsMany #CML #PatientVoices #GlobalHealth

[CML AdvocatesNetwork @cmlnet]

Different cancers. Different journeys. One shared voice.
This World Cancer Day, we stand united from CML to all cancers to support, advocate, and push for people-centred care.

#WorldCancerDay #UnitedByUnique #CML #CMLAwareness #PatientAdvocacy

[CML AdvocatesNetwork @cmlnet]

🔔 Don’t forget to register for #CMLHZ26!
If you haven’t registered yet for CML Horizons 2026, now is the time. Join the global CML patient advocacy community in Tbilisi, Georgia, from 19–21 April 2026.

👉 Register here:
https://t.co/1KUZ20j8jp

⚠️ Important reminder: If you may require a visa, please register as soon as possible so there is enough time for visa processing and invitation letters.

We look forward to seeing you at #CMLHZ26!

#CMLHorizons #CMLAdvocates #PatientAdvocacy

[CML AdvocatesNetwork @cmlnet]

🌍World Cancer Day February 4th, 2026 | #UnitedByUnique
World Cancer Day marks an important moment for the global cancer community to come together — to reflect on progress made and to highlight the work still needed in cancer care, policy, and support.

Coordinated by UICC and supported by the European Cancer Organisation, this year’s theme “United By Unique” celebrates the distinct experience of every person affected by cancer and amplifies the human stories behind each diagnosis. It also calls for meaningful policy action to improve outcomes for everyone living with cancer.

📣 Explore ways you can take part in the campaign and access resources: https://t.co/8gjT9spu01

📅 A series of European-level events and initiatives are taking place before and during World Cancer Day — including a key session organised by the European Parliament Intergroup on Cancer & Rare Diseases on 3 February.

Let’s stand together, across borders and communities, to drive change. 💛

#WorldCancerDay #UnitedByUnique #CancerPolicy #PatientVoice #HealthEquity

[CML AdvocatesNetwork @cmlnet]

✨ #CMLHZ26 registration is now open! ✨

📍 Tbilisi, Georgia
🗓️ 19–21 April 2026

CML Horizons 2026 will bring together CML patient advocates from across the globe to share knowledge, build skills, and strengthen our collective voice.

👉 Register today: https://t.co/FjjKAfQvjp

#patientadvocacy

[CML AdvocatesNetwork @cmlnet]

According to the experts, talking to children about cancer can be difficult, but the key to success is honesty.

Read more on #CMLLIFE https://t.co/kZZ2ekfeMM

#cml #PatientSupport #PatientAdvocacy