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CML Horizon iga-aastane konverents 2014

CML Advocacy: Learn. Share. Grow.
2-4 May 2014, Belgrade, Serbia

On 2-4 May 2014, 119 delegates from 58 countries supporting patients and families affected by Chronic Myeloid Leukemia (CML) met in Belgrade (Serbia) to learn from medical experts, share best practice in patient advocacy and grow their organization’s capacity. Again this year, enlightening medical sessions and discussions, inspiring posters and enriching best practice examples served mainly two purposes: to improve the life of patients and empower patient groups!

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 “Web Stream” to see the video of the presentation.

Please note that the speakers have authorized CML Advocates Network only to provide the PDFs and webstreams on this website, but it is not allowed to upload the PDFs 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 to Belgrade, by Jelena Čugurović (CML Association of Serbia) –  PDF – Video Stream
  • Tribute to Prof. John Goldman, by Giora Sharf (CML Advocates Network)  –  PDF – Video Stream
  • Video Message, by Dr. Brian Druker –  Video (English – English with German subtitles)

Parallel pre-meetings

  1. CML basics and CML 101 (Pat Garcia-Gonzalez, María Isabel Gómez de Soriano)  –  PDF  –  Video Stream
  2. How CML patient advocates could engage in CML research (Jan Geissler, Mina Daban, Felice Bombaci)  –  PDF

Advocacy-Session #1: Presenting the regions – initiatives, priorities and main challenges of each region and how the CML Advocates Network helps addressing them

Medical Session #1: CML Update

  • Update on available treatments (Neil Shah)  –  PDF  –  Video Stream
  • Update on ELN therapy recommendations (Giuseppe Saglio)  –  PDF  –  Video Stream
  • Today’s role of transplant in CML – only for blast crisis or earlier? (Qian Jiang)  –  PDF  –  Video Stream

Medical Session #2: CML in real life, comorbidities and drug interaction

  • CML in real life: The importance of quality of care & how to treat patients in countries with limited resources (Andrija Bogdanovic)  – PDF  –  Video Stream
  • Long-term side effects and comorbidities (Neil Shah)  –  PDF  –  Video Stream
  • Drug Interactions from a pharmacology perspective (Annette Freidank)  –  PDF  –  Video Stream

Advocacy-Session #2: Hands-on use of Social Media by Patient Organisations

  • How to maximize Facebook and Twitter to reach a broader patient audience (Martin Godfrey – 3 Monkeys)  –  PDF  –  Video Stream

Advocacy-Session #3: Developing and implementing an Advocacy Strategy

  • Strategy & Best Practice Example “EATG Community Advisory Boards” (Tamás Bereczky – EATG)  –  PDF  –  Video Stream

Medical Session #3: The new realities: Generics and Copy Drugs in CML

  • Generics, copies & substandard drugs, How to assess quality of drugs and labs (Yoseph Caraco)  –  PDF  –  Video Stream
  • CML generics from a patient perspective (Cheryl-Anne Simoneau)  –  PDF  –  Video Stream
  • CML generics from a hematologist perspective (Andrija Bogdanovic)  –  PDF  –  Video Stream
  • CML generics from a hematologist perspective (Qian Jiang)  –  PDF  –  Video Stream

Medical Session #4: Treatment-Free Remission, or Eradicating CML?

  • STOP trials – results, learnings and outlook (Giuseppe Saglio)  –  PDF  –  Video Stream
  • The concept of STOP trials – is there a new role for Interferon? (Susanne Saußele)  –  PDF  –  Video Stream
  • Outlook – The future of CML therapy (Neil Shah)  –  PDF  –  Video Stream

Advocacy-Session #4: Supporting people living with CML

  • Book presentation:“Le Livre Blanc des Etats Generaux de la LMC“ – from the first general state of the LMC (Mina & Stéphane Daban – LMC France, France)  –  PDF  –  Video Stream
  • Managing distress as an advocate (Gail Sperling – The Leukemia & Lymphoma Society, USA)  –  PDF  –  Video Stream
  • Sex, self-esteem and a chronic disease (Sarah Liptrott – European Institute of Oncology, Italy)  –  PDF  –  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 2013-2015 is:

  • Gina Russo / Gail Sperling (USA/North America)
  • Bahija Gouimi (Morocco/Africa)
  • Mina Daban (France/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, giora@cmladvocates.net and Jan Geissler, jan@cmladvocates.net

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 (Gold Sponsor)
  • Ariad (Bronze Sponsor)
  • The Leukemia & Lymphoma Society (Bronze Sponsor)
  • International CML Foundation (Bronze Sponsor)