CML ADVOCATES NETWORK

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CML Horizons 2017: Learn. Share. Grow.
26th – 28th May 2017, Frankfurt, Germany

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

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

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:
  • 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