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CMLHZ13-group-photoCML Horizons 2013

CML Advocacy: Learn. Share. Grow.
3-5 May 2013, Prague, Czech Republic

The "CML Horizons 2013" conference, held on 3-5 May in Prague (Czech Republic), was a great success. We were thrilled to welcome 141 participants from almost 60 countries. The conference has once again demonstrated the great power of the global community: inspiring best practice presentations, posters, marketplace sessions and Action Forum sessions - and excellent updates by CML experts. But the conference doesn't just provide scientific knowledge and advocacy skills, but much more - we feel that over the years, the community has developed a great collaborative spirit across borders and regions, and has become a unique global family.

CML Horizons is a fully community-run and multi-sponsored conference, which has evolved from the "New Horizons" conferences 2002-2011. It was run by the CML Advocates Network, hosted by the newly established, non-profit, swiss-based, patient-driven "Leukemia Patient Advocates Foundation" in Switzerland.

Presentations and Video web streams

Click on "PDF"  to see all presentations or on "Video Stream" to see the full video web-stream of all sessions! Please note that the speakers have authorized CML Advocates Network to provide the PDFs on this website, but it is not allowed to upload them somewhere else! So if you want to share the slides or the webstreams, please do this by linking to this page or the files on this site!

 

Welcome

 

Welcome note by star tenor and leukemia survivor José Carreras

European Session

  1. Introduction - Video Stream
  2. Health Technology Assessment
    • HTA and patient involvement from a European perspective (Martin Visnansky, Slovakia) -  PDF - Video Stream
    • HTA and CML: involvement in practice (David Ryner, UK) -  PDF - Video Stream
  3. Cross border healthcare in the EU (S. Narbutas, Lithuania) - Video Stream

Ideal World vs. Reality: New Challenges with Substandard Drugs & Generics

CML Update

  • Introduction (Zhenxi Zhong, China) - Video Stream
  • All available drugs from clinical/efficacy point of view - how do they compare?  (Gianantonio Rosti, Italy) -  PDF - Video Stream
  • All available drugs from a side effect point of view - how do they compare? (Dina Ben Yehuda, Israel) -  PDF - Video Stream
  • Most potent induction, or early escalation on the most affordable drug? Context of therapy optimization and costs (Tim Hughes, Australia) -  PDF - Video Stream

Path to cure and treatment-free survival

  • Does transplant still have a role? News in transplant? How to treat advance disease? Transplant+TKI combination? (Jane Apperley, UK) -  PDF - Video Stream
  • Latest experience from STOP trials (Tim Hughes, Australia) -  PDF - Video Stream
  • What is the "real" cure? Is stopping really a feasible approach? (Dina Ben Yehuda, Israel) -  PDF - Video Stream
  • Panel discussion - is stopping feasible or do we need to wait for new curative treatments? - Video Stream

Experts Market Place

  • Using the Internet for CML advocacy (Kris Griffin, "Access CML Drugs" Blog, UK) -  PDF - Video Stream
  • How to advocate to policy makers (Nicola Bedlington, European Patients' Forum) - PDF
  • Working with pharma (Sandy Craine, CML Support UK; Helen Roberts, Novartis Oncology) - PDF1, PDF2
  • How to run a patient group meetingPDF (Viji Venkatesh, Markus Wartenberg)

CML in Real Life – Quality of life, adherence and pregnancy

  • CML and Quality of Life: What is the impact of life-long CML therapy on Quality of Life? (Fabio Efficace, Italy) -  PDF - Video Stream
  • Results from our global CML Advocates Adherence Survey (Giora Sharf, Israel) -  PDF - Video Stream
  • CML and pregnancy, how to plan a family (Jane Apperley, UK) -  PDF - Video Stream

Best Practice in CML Advocacy

  • Introduction (Jana Pelouchová, Czech Republic) - Video Stream
  • Rising Sun, a network of CML advocates from the Asia-Pacific region (Rod Padua, Philippines) -  PDF - Video Stream
  • Counselling sessions with haematologists as volunteers for patients (Milena Remic, Slovenia) -  PDF - Video Stream
  • Advocacy networking - joining forces with like-minded organizations to spread cancer awareness (Ferdinand Mwangura, Kenya) -  PDF - Video Stream
  • CML Life Africa (Bahija Gouimi, Morocco) -  PDF - Video Stream
  • What is my PCR? A global awareness campaign (Pat Garcia-Gonzalez, US) -  PDF - Video Stream
  • Quality of Life survey (Cheryl-Anne Simoneau, Canada) -  PDF - Video Stream

Monitoring and Guidelines

  • Introduction (Pat García-Gonzalez, US) - Video Stream
  • The basic monitoring before we can talk about "cure" (Katerina Machova-Polakova, Czech Republic) -  PDF - Video Stream
  • New and advanced monitoring techniques – and their costs (Tim Hughes, Australia) -  PDF - Video Stream
  • What do the treatment guidelines say? Update on the new ELN, NCCN recommendations (Gianantonio Rosti, Italy) -  PDF - Video Stream
  • Discussion: The (political and medical) importance of medical guidelines, how patient groups can contribute - Video Stream

Advocacy in Action: The Action Forum

  • How to increase engagement on World CML Day (Kathy Redmond, Erin Schwartz)
  • Increasing capacity in CML groups, introducing training (René Steuer) -  PDF - Video Stream
  • Call for better care: updating the Baveno declaration (Pat Garcia-Gonzalez)
  • Report of break-out-sessions - Video Stream

CML Steering Committee

The programme has been governed by a global steering committee consisting of CML patient advocates from North America, Latin America, Asia, Europe, Middle East and Africa. The CML Steering Committee 2011-2013 was:

  • Anita Welborn (USA/North America)
  • Bahija Gouimi (Morocco/Africa)
  • Euszebius Jan Dziwinski (Poland/Europe)
  • Giora Sharf (Israel/Middle East)
  • Jan Geissler (Germany/Europe)
  • Jana Pelouchová (Czech Rep./Europe)
  • Pat Garcia-Gonzalez (USA/Latin America)
  • Zhengchen Liu (China/Asia-Pacific)

For any questions regarding the conference, please contact the conference coordinators Giora Sharf, and Jan Geissler,

 

Sponsorship Acknowledgement

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 (Silver Sponsor)
  • Ariad (Silver Sponsor)
  • The Leukemia & Lymphoma Society (BronzeSponsor)
  • International CML Foundation (Additional supporter)
  • AsuraGen (Additional supporter)