CML Advocacy: Learn. Share. Grow.
4 – 6 May 2018, Warsaw, Poland
During the annual CML Horizons Conference on 4 to 6, May 2018 the CML Advocates Network welcomed 117 attendees (among them 41 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to Warsaw, Poland. Delegates from around the world (Europe, North America, Asia, Africa, Middle East and Latin America) came to Warsaw to learn from experts both medical and patient advocates on the latest information about CML, share best practices in patient advocacy in order to grow their organisations in their own countries and give back to their own communities. This year we had introduced the “Poster Presentation Session” that gave our members the opportunity to interact with other CML Patient Organisations and showcase their organisation on a worldwide platform and share their activities and/or best practices.
Our member Amal Hrim gave a heartbreaking moving tribute to our dearly beloved Ferdinand Mwangura and the community and members of the Africa & Middle East region have voted for Bahija Gouimi to act as temporary region steering committee until next elections.
The conference has over the years shown the immense energy and power of the worldwide CML Community: inspirational poster presentations, interactive regional workshop and outstanding and relevant presentations by CML medical and advocate specialists. The meeting doesn’t simply give us just medical insight and advocacy expertise, but considerably more – we feel that throughout the years, the group has built up an extraordinary community crossing oceans and borders to improve the life of patients and empower new and existing patient groups and has turned into a remarkable universal family.
CML Horizons is a wholly community-run and multi-sponsored conference, which has evolved from the “New Horizons” conferences 2002-2011. The annual conference is run by the CML Advocates Network, hosted by the non-profit, Swiss-based and patient-driven “Leukemia Patient Advocates Foundation”.
Presentations, Video streams and Photo Gallery are available now!
To view, all the presentations just Click on “PDF”. Should you wish to translate selected presentation, please contact Lidija Pecova at email@example.com and request for the PowerPoint file. This will make it easier for you to translate the presentation into the language of your choice.
Please take note that the speakers have authorized CML Advocates Network to disburse the presentations in PDF format only on this site, however, it isn’t permitted to transfer the PDF files elsewhere! If you would like to share the slides, kindly do this by connecting to this page or the documents on this site!
To view individual sessions, click on “Video Webstream” below.
Of course, you can reflect back on of the 16th CML Horizons Conference by viewing the photo gallery, HERECML Horizons 2018: Learn. Share. Grow. 4 – 6 May 2012, Warsaw, Poland
- Welcome The CML Horizons Steering Committee, Jana Pelouchová, Giora Sharf and Euzebiusz Jan Dziwinski – PDF1 PDF2 Video Webstream
- Update on the CML Advocates Network (Jana Pelouchová,) – PDF Video Webstream 1 and Video Webstream 2
- Tribute to Ferdinand Mwangura (Amal Hrim) – PDF Video Webstream
CML 301 – Introduction to CML, science and data Overview of CML Horizons (Šarūnas Narbutas and Jan Geissler) – PDF Video Webstream
Medical Session #1: CML Management in Countries with Access Challenges
- Access to treatment (Eastern Europe) (Andrija Bogdanovic) – PDF Video Webstream
- Access to monitoring (Africa) (Nicholas Anthony Othieno Abinya) – PDF – Video Webstream
- TFR in low and middle-income countries (Asia) (Raymond Wong) – PDF – Video Webstream
Advocacy Session #1: Improving the communication with patients
- Patient-Doctor Communications: Introduction and moderation, Why is patient-doctor communication important (Cristián Neves) PDF
- Roleplay: Gail Sperling(doctor; Gianantonio Rosti (patient)and Erin Schwarz(wife) – Panel discussion with Q&A, – Video Webstream
- Communication with patients; Managing anxiety (Irene Caballes) – PDF – Video Webstream
- Talking to teenage patients (Cristián Neves) – PDF – Video Webstream
- Empowering the caregivers (Gail Sperling – LLS) – PDF – Video Webstream
Regional Sessions Report – Video Webstream
Advocacy Session #2: Evidence-Based Advocacy 1 – Generating the evidence
- Barking up the right tree on access, policy & research. Why evidence-based advocacy? (Jan Geissler) – PDF Video Webstream
- What kind of data? Some advocacy examples Doing surveys: The Leukaemia Care Patient Experience Survey (Zack Pemberton-Whiteley) –PDF – Video Webstream
- Social Media-based data: Facebook Group example (Toni Montserrat) PDF – Video Webstream
- Patient-Reported Outcome Measures (Felice Bombaci) – PDF – Video Webstream
- Doing Focus Groups: Max Foundation Focus Group on PCR (Cathy Scheepers) – PDF – Video Webstream
Medical Session #2: First-line decision making
- Did the introduction of generics change clinical decisions in first-line therapy? (Gianantonio Rosti) – PDF – Video Webstream
- Pediatrics: New labels of Nilotinib and Dasatinib (Meinolf Suttorp) Available from 1st July 2018
- Update on Treatment Guidelines (Delphine Rea) – PDF – Video Webstream
Medical #3: Side Effect Management
- Long-term side effects of TKIs (Gianantonio Rosti) – PDF – Video Webstream
- Collaboration of cardiologists and hematologists (Tristan Mirault + Delphine Rea) – PDF – Video Webstream
- Side effect management: Nurse experience (Irene Caballes) – PDF – Video Webstream
Advocacy #3: Stopping CML treatment – clinical data, bad practice, patient information
- Clinical update on TFR studies (Delphine Rea) – PDF – Video Webstream
- Bad Practice examples (Jan Geissler) – PDF – Video Webstream
- Informing patients about TFR (Giora Sharf) – PDF – Video Webstream
Medical #4: New Agents / New Regimens
- ABL001/Ascitinib trials (Delphine Rea) – PDF – Video Webstream
- Is there any evidence to use lower TKI doses? (Delphine Rea) – PDF – Video Webstream
- How will therapeutic landscape in CML change in next 5 years in your region? Panel discussion with speakers from Asia (Raymond Wong) Africa (Nicholas Anthony Othieno Abinya) Eastern Europe (Andrija Bogdanovic), Europe (Gianantonio Rosti) – PDF – Video Webstream
Advocacy #4: Evidence-based advocacy 2 – Using the evidence (Theory & Examples)
- Influencing industry: Example WECAN Legal Agreements survey (Šarūnas Narbutas) – PDF – Video Webstream
- Influencing regulators and HTA: Example patient evidence in HTA in the UK (Zack Pemberton-Whiteley) – PDF – Video Webstream
- Influencing scientists and clinicians: Example Surveys on adherence, TFR and generics (Jan Geissler) – PDF – Video Webstream
Best Poster Award, closing and farewell; The CML Horizons Steering Committee – Video Webstream
CML Steering Committee
The programme has been governed by a global steering committee consisting of CML patient advocates from North America, Latin America, Asia and Pacific, Western Europe, Central and Eastern Europe & West Asia, Middle East and Africa. The CML Steering Committee 2018-2019 is:
- Giora Sharf (Israel, co-founder & permanent member of the Steering Committee)
- Jan Geissler (Germany, co-founder & permanent member of the Steering Committee)
- Jana Pelouchová (Czech Republic, co-founder & permanent member of the Steering Committee)
- Gail Sperling (the USA, region North America)
- Bahija Gouimi (Morocco, region Africa & Middle East)
- Zack Pemberton-Whiteley (the United Kingdom, region Western Europe)
- Sarunas Narbutas (Lithuania, region Central and Eastern Europe & West Asia)
- Mercedes Arteaga (The Max Foundation – Argentina, the region of Latin America)
- Rod Padua (the Philippines, region Asia-Pacific)
For any questions regarding the conference or you have any feedback or suggestions, please contact; our Programme Manager Lidija Pecova email: firstname.lastname@example.org
We would like to thank the following organisations for providing unconditional educational funding. Without their support, this conference would not be possible:
Novartis Oncology (Initiating platinum sponsor)
Bristol-Myers Squibb (Gold Sponsor)
Pfizer Oncology (Gold Sponsor)
Incyte (Gold Sponsor)
The Leukemia & Lymphoma Society (Bronze Sponsor)
International CML Foundation (Bronze Sponsor)