Dana 26-28.05.2017. u Frankfurtu je održana CML Horizons konferencija gdje je CML Advocate mreža ove godine ugostila više od 100 predstavnika s osnovnim ciljem pružanja potpore pacijentima oboljelim od kronične mijeloične leukemije I njhovim obiteljima.

Prezentacije, fotografije i video zapise Vam donosimo direktno sa CML Advocates stranice

CML 101. Overview of CML Horizons 2017 (Pat García-González)  –  PDF – Video Webstream

Parallel Regional Networking Sessions

• Africa: Access in Africa – Building Bridges (Bahija Goumi)
• Asia: Living CML Asia (Rod Padua)
• Europe: European Patient Advocacy and Key European Projects (Jan Geissler) – PDF – Video Webstream

Welcome

• Welcome (Giora Sharf) – PDF – Video Webstream
• Update on the CML Advocates Network (Jan Geissler and Giora Sharf) – PDF – Video Webstream
• Tribute to Abdoul Nasser Boukhari (Bahija Gouimi) – Video Webstream
  

Advocacy Session #1: Patient Advocacy – How does drug development work

• Keynote: Why the voice of patients matters in research and regulatory affairs (Bettina Ryll)  –  PDF – Video Webstream
• The basics of medicines development and how to educate yourself about medicines R&D (Jan Geissler) – PDF – Video Webstream

Medical Session #1: CML therapies in 2017: Evolution, hope and challenges

• Guidelines and real world: Management of CML in chronic and advanced phases (Carolina Pavlovsky)  –  PDF – Video Webstream
• Management of CML in countries with limited access to treatment and diagnostics (Ivana Urosevic)  –  PDF – Video Webstream
• Role of combination treatments, Interferon and immunotherapy in CML (Andreas Burchert)  –  PDF – Video Webstream

Advocacy Session #2: Parallel Session

• Working with regulators and policy-makers (David Haerry)  –  PDF 
  
• Building and managing volunteers – NGO Management (Ananda Plate)  –  PDF 
  
• Collaborative action between doctors and patients (Bettina Ryll) – PDF 
  

Presentation of nominees for elections of the CML Horizons Steering Committee 2018-2019

Medical Session #2: Discontinuing treatment – what we know & what the future brings

• Stopping treatment – how much we understand about mechanisms to stop successfully today, and where are the limits? (Andreas Hochhaus) – PDF – Video Webstream
• Patient perspective on living with TFR in all four phases – and the CML Advocates TFR Workgroup (Giora Sharf)  –  PDF – Video Webstream
• Debate: Are we ready for recommendations to stop outside of trials? (Andreas Hochhaus, Jane Apperley and Carolina Pavlovsky) – Video Webstream

Advocacy Session #3: Access: The good, bad and ugly

• Access to treatment in western countries, and the “can of worms” (Jan Geissler) –  PDF – Video Webstream
• Access to treatment in low and middle income countries, and access programmes (Pat García-González)  –  PDF – Video Webstream
• Debate: What can the community do about improving access to treatment and monitoring? – Video Webstream

Medical Session #3: Side effects, pregnancy and fertility

• Long-term side effects, comorbidities & their impact on choice of treatment CML management and quality of life (Andreas Hochhaus) –  PDF – Video Webstream
• Pregnancy & Fertility (Jane Aperley)  –  PDF – Video Webstream

Advocacy-Session #4: Best practices in patient advocacy

• Euriclea: The new nurse role in supporting Italian CML patients (Felice Bombaci) – PDF – Video Webstream
• Starting organization from scratch (Boris Machavariani) – PDF – Video Webstream
• CML care to a next level (Jan de Jong) – PDF – Video Webstream
• Survey patient-to-patient on Side Effects (Toni Montserrat) – PDF – Video Webstream
• The Canadian CML Network Patient Hub (Lisa Machado) – PDF – Video Webstream
• Annual Family Meeting (Yunus Borowczak) – PDF – Video Webstream
• CML patients’ journey (Giora Sharf) – PDF – Video Webstream
• “Free Hugs” campaign (Rod Padua) – PDF – Video Webstream

CML Horizons Steering Committee 2018-2019: Results of the elections – Video Webstream

Report from Regional Sessions – PDF – Video Webstream

Medical Session #4: Advocacy Session #5: Generic drugs in CML 

• CML generics: Status quo and the CML Declaration (Sarunas Narbutas)  –  PDF – Video Webstream
• Clinicians Perspectives on CML Generics:
  • Example Latin America (Carolina Pavlovsky)  –  PDF – Video Webstream
  • Example Serbia (Ivana Urosevic) – PDF – Video Webstream
  • Example Germany (Andreas Hochhaus)  –  PDF – Video Webstream
• Debate: What can we do to advocate for quality generics?  (Jan Geissler, Giora Sharf, Rod Padua, Sarunas Narbutas, Milena Remic) – Video Webstream

Advocacy Session #6: Joint action and Community Advisory Boards

•  Community Advisory Boards: A powerful tool for the impatient patient (David Haerry) –  PDF – Video Webstream
• The CML Community Advisory Board: Status Quo, Learnings and Next Steps (Jan Geissler & Giora Sharf)  –  PDF – Video Webstream
• “World CML Day: Achievements and outlook” (Celia Marín) – PDF – Video Webstream

• Debate: How do we improve our impact as a CML community? Video Webstream

Best Poster, Clossing and Farewell – 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 2016-2017 was:

• 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 (USA, region North America)
• Bahija Gouimi (Morocco, region Africa & Middle East)
• Rita O. Christensen (Denmark, region Western Europe)
• Pat Garcia-Gonzalez (USA, elected representative region Latin America)
• Rod Padua (Philippines, region Asia-Pacific)
• Jelena Cugurovic (Serbia, region Central and Eastern Europe & West Asia)

The new CML Horizons Steering Committee elected during the CML Horizons 2017 conference and appointed for the period 2018-2019 consists of the following representatives:

• 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 (USA, elected representative region North America)
• Ferdinand Mwangura (Kenya, elected representative region Africa & Middle East)
• Zack Pemberton-Whiteley (United Kingdom, elected representative region Western Europe)
• Sarunas Narbutas (Lithuania, elected representative region Central and Eastern Europe & West Asia)
• Mercedes Arteaga (USA, elected representative region Latin America)
• Rod Padua (Philippines, elected representative region Asia-Pacific)

For any questions regarding the conference, please contact Celia Marín  Lidija Pecova

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)

Incyte (Gold Sponsor)

Takeda Oncology (Silver Sponsor)

The Leukemia & Lymphoma Society (Bronze Sponsor)

International CML Foundation (Bronze Sponsor)

Izvor: CML Advocates Network / Horizons