CML Advocates Network

CML Advocacy: Learn. Share. Grow. 11-13 May 2012, Munich, Germany

The "CML Horizons 2012" conference, held in Munich in May 2012, was a great success, with 86 patient advocates from from 48 countries participating in this meeting. It enabled CML patient advocates to:

• identify opportunities in patient advocacy and patient support
• be inspired and gain the courage to fight for the rights of patients with CML
• learn from the experts: patient advocates, nurses and physicians
• share ideas and best practices, interact and exchange ideas
• start networking across borders and help build alliances

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.

Programme and Video Web Streams

Click on the titles of the presentations to see the web stream!

1. Welcome!

• Welcome to Munich, by Jan Geissler
• About the CML Advocates Network and the Leukemia Patient Advocates Foundation, Giora Sharf

2. Bringing down access barriers, chaired by Pat Garcia Gonzalez and Zhenxi Zhong

• Access to Diagnostics & Monitoring: Example Ethiopia, by Pat Garcia Gonzalez, USA
  + Discussion
• Access to Clinical Trials: Example Latin America, by Merula Steagall, Brazil
• Access to Treatment: Example Asia, by Mohamad Abd Razak, Malaysia

3. CML Session #1: Side Effects Management & CAM, chaired by Sarunas Narbutas and Erik Aerts

• Introduction
• Complementary Medicines and Drug-Drug Interactions, by Jutta Hübner, University Clinic of Frankfurt, Germany
• Side Effect Management in CML, by Peig O'Carrol, St. James's Hospital, Dublin, Ireland
  + Discussion

4. Tribute to lost friend: Zavie Miller, by Bahija Gouimi and Giora Sharf

5. CML Session #2: Best standard care in CML, chaired by Sandy Craine and Mei Ching Ong

• Update on approved TKIs, Jorge Cortes, MD Anderson Cancer Center, Houston, Texas
• Practical management of CML, Andreas Hochhaus, University Clinic of Jena, Germany
• How to treat first line failures?, Delphine Réa, Hospital Saint Louis, Paris, France

6. Experts Market Place (no web streams available)

• The challenges of adherence in CML, Lina Eliasson, Atlantis Healthcare, London, UK
• Drug-drug interaction, Yair Bar David, Israel
• Coping with cancer in the family, Christiane Viereck, Hospital Munich-Grosshadern, Germany
• Different approaches to fundraising, Merula Steagall, ABRALE, Brazil
• Pregnancy in CML - Pregnancy Registry, Ekaterina Chelysheva, Hematology Research center, Moscow, Russian Federation
• The EBMT CML Education Program, Erik Aerts, University Hospital Zürich, Switzerland

7. CML-Session #3: Monitoring CML, chaired by Jana Pelouchova and Nikolai Lamberts

• Monitoring treatment success and failure in CML, Andreas Hochhaus, University Clinic of Jena, Germany
• How CML monitoring is being made, Susanne Schnittger, MLL, Germany
• Monitoring CML in low resource countries, Jorge Cortes, MD Anderson Cancer Center, USA

8. CML Advocacy Market Place (no web streams available)

• Educating Children and Parents - Bahija Gouimi, Morocco
• How to improve informed consent in CML studies - the EUROSKI example - Marie-Christine Eckle, Germany
• Media awareness & partnering about rare diseases  - Dorica Dan, Romania
• Overcoming barriers to diagnostics  and "What is my PCR" campaign - Rod Padua, Philippines
• Building alliances on drug access - Anthony Wong, Hong Kong
• How to establish local support groups - Mercedes Arteaga, Argentina

9. CML-Session #4: Research and Future Outlook in CML, chaired by Rod Padua and Giora Sharf

• Targeting stem cells and eradicating CML, Ali Turhan, Université de Poitiers, France
• (When) can we safely stop therapies? Experience from the STOP trials, Delphine Rea, Hospital Saint Louis, Paris, France
• New drugs - are they getting us closer to cure?, Andreas Hochhaus, University Clinic of Jena, Germany,

10. Communicating Your Message, chaired by Anita Welborn and Jan Geissler

• How NGOs can bring about their message, create awareness, and campaign for the cause, Tara Williams, Lance Armstrong Foundation, USA
• International CML Awareness Day: How to campaign for CML, Mina & Stéphane Daban, LMC France
  + Discussion

11. Award of Best Poster and Meeting Close

• Award of Best Poster, and Meeting Close by the CML Steering Committee

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:

• 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, This email address is being protected from spambots. You need JavaScript enabled to view it. and Jan Geissler, This email address is being protected from spambots. You need JavaScript enabled to view it.

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 sponsor)
• Bristol-Myers Squibb
• Pfizer Oncology
• Ariad
• The Leukemia & Lymphoma Society
• International CML Foundation
• Lance Armstrong Foundation