CML ADVOCATES NETWORK

CML Horizons 2016

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CML Horizons 2016 – Learn. Share. Grow: Presentations, web streams and photo gallery now available!

From 6-8 May 2016, the CML Advocates Network welcomed 118 patient advocates to its annual conference CML Horizons in Ljubljana (Slovenia). Delegates from 65 countries in Europe, North America, Asia, Africa, Middle East and Latin America came to learn from medical experts, share best practice in patient advocacy and grow their organization’s capacity.

CML Horizons is a fully community-run and multi-sponsored conference, hosted by the patient-driven non-profit Leukemia Patient Advocates Foundation.

Conference Report

The detailed report summarizing all key sessions and findings is available for download here.

Presentations and video-webstreams

Find the presentation slides and the video webstreams of all sessions here:

Introductory Session

  • CML 201 – Overview of CML Horizons 2016 and preparation for the medical sessions (Pat Garcia Gonzalez) – PDF – Video-Webstream

Opening

Advocacy Session #1: Patient Advocacy in Research

  • Patient involvement in medicine R&D and PRO (Bettina Ryll) – PDF – Video-Webstream
  • Patient-generated data: how can advocacy groups generate and publish results – a practical example: the CML Adherence Survey (Giora Sharf) – PDF – Video-Webstream
  • How to partner with medical writers (Marion Alzer) – PDF – Video-Webstream

Medical Sessions #1: CML State of Play and Future

  • ELN Recommendations on treatment choice and response (Gianantonio Rosti) – PDF – Video-Webstream
  • Imatinib and Ponatinib – two ends of the spectrum in 2016’s reality? (Steve O’Brien) – PDF – Video-Webstream
  • Switching treatments in suboptimal response and intolerance: What to take when? (Daniela Zackova) – PDF – Video-Webstream
  • Debate on state of play 2016 in CML therapy (Gianantonio Rosti, Daniela Zackova, Steve O’Brien) – PDF
  • Future of CML: ABL001 and others treatments in the pipeline (Gianantonio Rosti) – PDF – Video-Webstream

Advocacy Session #2: Best Practice in Advocacy

Presentation of key initiatives of CML patient organisations in the areas of “CML generics” and “advocating for access to CML therapy”

  • Access Issues as Generic Imatinib Arrives in USA (Jerry & Joannie Clements, Greg Stephens) – PDF – Video-Webstream
  • Advocating for access in CML/GIST therapy (Puthen Parameswaran) – PDF – Video-Webstream
  • Fight for continuity of care – is it feasible? (Tamie Kimmelmann) – PDF – Video-Webstream
  • Little by little the bird makes its nest: Access to CML diagnostics (Abdoul Nasser) – PDF – Video-Webstream
  • Exempting Goods and Services Tax (GST) on CML drugs (Abu Hurairah Bahari) – PDF – Video-Webstream
  • TKIs access: A Road Less Travelled (Ken Choy) – PDF – Video-Webstream

Medical Session #2: Stopping Treatment

  • Introduction of Oxford Style Debate (Giora Sharf) with pre-debate vote on the motion that is either for, against or undecided – PDF – Video-Webstream
  • Oxford Style debate on stopping CML treatment

Advocacy Session #3: Financial Management

  • Show your muscles: Reporting in-kind contributions in financial reports of patient organizations (Patrice Regnier) – PDF – Video-Webstream
  • Writing grant requests (Kris Rogers) – PDF – Video-Webstream
  • Fundraising in non-pharma (Kris Rogers) – PDF – Video-Webstream

Medical Session #3: CML at Both Ends of Life

  • CML in elderly: The challenge of co-morbidities and cardiovascular predispositions on choice of therapy (Daniela Zackova) – PDF – Video-Webstream
  • CML in young adults: Special challenges, adherence, fertility (Gianantonio Rosti) – PDF – Video-Webstream

Advocacy-Session #4: “World CML Day” – Training and Best Practice

  • Training Session: Social Media use for World CML Day (Sofia Sá Cardoso) – PDF – Video-Webstream
  • Best practice examples on the use of the World CML Day Kit in 2015 (Erin Lindsay Schneider) – PDF – Video-Webstream
  • Training Session: Posters and event planning (Jelena Cugurovic) – PDF – Video-Webstream

Medical Session #4: Diagnostics and Monitoring

  • Importance of monitoring response (Steve O’Brien) – PDF – Video-Webstream
  • Testing and monitoring in low-resource countries (Pat Garcia-Gonzalez) – PDF – Video-Webstream
  • State of the art testing in high-resource countries (Gianantonio Rosti) – PDF – Video-Webstream

Advocacy-Session #5: Psychological Issues

  • How to train advocates to handle newly diagnosed patients and complex situations (Guy Tavori, Cristian Neves) – PDF – Video-Webstream
  • Caring for the caregivers (Cristian Neves) – PDF – Video-Webstream
  • Cancer at the workplace (Ward Rommel) – PDF – Video-Webstream

Distribution of presentations and videos

If you wish to translate selected presentation, please contact us at info@cmladvocates.net. Please note that the speakers have authorized CML Advocates Network only to provide the PDFs on this website, so please do not upload the PDFs somewhere else! So if you want to share the slides, please do this by linking to this page or the files on this site!

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 2016-2017 is:

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

For any questions regarding the conference, please contact Nicole Schröter, nicole@cmladvocates.net or the scientific 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 (Gold Sponsor)
  • The Leukemia & Lymphoma Society (Bronze Sponsor)
  • International CML Foundation (Bronze Sponsor)