CML Advocacy: Learn. Share. Grow.

17 – 19 May 2019, Lisbon, Portugal

The 17th International CML Horizons Conference was held in Lisbon, Portugal from the 17th to 19th May 2019

This year we greeted a record 119 participants and welcomed 22 newcomers who all support the CML Community worldwide with a very active engagement in Social Media by sharing, making comments and networking in Facebook, Twitter and Instagram during the meeting.

Hundreds of posts on the Facebook Pages of the CML patient advocates and groups were informing thousands of people worldwide and more than 300 Tweets using the hashtag #CMLHZ19 got a large impact on the online CML community with more than 11.000 impressions on this social media channel.

Our participants were given the opportunity to hear from 21 speakers from both medical and patient advocate specialists.

In addition to the expert presentations from our acclaimed speakers our participants once again through the interactive regional workshops collectively played a role in strengthening the regions.

The conference also offers cross border networking where delegates were able to share best practices, interact and exchange ideas.

The poster session has become extremely popular and 21 advocates showcased their organisations’ activities.

Read more to access to the Presentations, Video Streams and Photo Gallery of the CML Horizons 2019 Conference.

Throughout the years the conference has gained huge vitality and intensity of the global CML Community: moving and encouraging posters, communal regional workshops and remarkable and significant presentations from renowned medical and advocate specialists.

The meeting doesn’t just give us simply medicinal understanding and advocacy training- we feel that consistently, the meeting has developed a phenomenal network crossing oceans and seas and reaching all continents around the globe to improve the life of patients and enable new and existing patient groups and has transformed into a unique multi-cultural family.

CML Horizons is a wholly community-run and multi-sponsored the conference, which has evolved from the “New Horizons” conferences 2002-2011. The annual conference is run by the CML Advocates Network, hosted by the non-profit, Swiss-based and patient-driven “Leukemia Patient Advocates Foundation“.

Presentations, Video streams and Photo Gallery are available now!

To view all the presentations just Click on “PDF”. Should you wish to translate the selected presentation, please contact us by email at the following info@cmladvocates.net and request for the PowerPoint file. This will make it easier for you to translate the presentation into the language of your choice.

Please take note that the speakers have authorized CML Advocates Network to disburse the presentations in PDF format only on this site, however, it isn’t permitted to transfer the PDF files elsewhere! If you would like to share the slides, kindly do this by connecting to this page or the documents on this site!

To view individual sessions, click on “Video Webstream” below or watch the following

VIMEO CML Horizons 2019 SHOWCASE

You can reflect back on of the 17th CML Horizons Conference by viewing the

CML Horizons 2019 Photo Gallery:

Day 1:

CML 101 – Re-fresher and especially recommended to newcomers to CML Horizons 2019

• Pat García-González PDF Video Webstream

Welcome

• Giora Sharf, co-founder of the CML Advocates Network PDF Video Webstream
• Sofia Sá Cardoso:  MyJourney PDF Video Webstream

CML 301 – Introduction into CML, science and data

• Gianantonio Rosti PDF Video Webstream

Status and Evolution of CML AN

• Update on CML AN and New Governance – Šarūnas Narbutas PDF Video Webstream
• CML CAB – Jan Geißler PDF Video Webstream
• Presentation of nominees – Giora Sharf PDF Video Webstream

Medical #1: Thinking about outcomes: What is the goal of CML Treatment?

• Presentation on guidelines and reality, incl. case study. Presented by Gianantonio Rosti on behalf of Amma Benneh-Akwasi and Presentation on QoL, incl. case study o Case study: young-old patient/patient preferences?. Gianantonio Rosti   PDF1 PDF2 Video Webstream
• Panel discussion: What is the goal of CML treatment? Survival of best quality of life. Panellists: Gianantonio Rosti, Qian Jiang, Jan Geißler, Param Subramaniam. Video Webstream

Advocacy #1: Improving access

• Status report on accessing therapy and diagnostics in CML. Pat Garcia-Gonzalez  PDF Video Webstream

• Innovation in bone marrow transplants. Gianantonio Rosti  PDF Video Webstream

• Accessing BMT, especially in LMI. Qian Jiang PDF Video Webstream

• Financial toxicity. Robert J. Thomas PDF Video Webstream

Day 2:

Medical #2: Monitoring, Diagnostics and Prognosis

• Risk profiles – and what do they tell us about the choice of treatment, chances for TFR, doing additional diagnostics. Mutation testing. Additional chromosomal abnormalities. Francois-Xavier Mahon PDF Video Webstream

• Reality check from a clinician perspective: How patients are monitored in LMI. Qian Jiang. PDF Video Webstream

• Reality check from a patient perspective: Overview on diagnostics and monitoring in Central America. Silvia Castillo de Armas PDF Video Webstream

Medical #3: Treatment-free remission

• Update from TFR studies. Francois-Xavier Mahon PDF Video Webstream (TBA)

• TFR in LMI – Myth or reality? Qian Jiang  PDF Video Webstream

• Results of the TFR 4 CML Patients – Psychological aspects, and how do we translate them into advocacy action for better and safer TFR Giora Sharf PDF Video Webstream

Advocacy #3: Key initiatives in CML advocacy – Best Practice Session

• World CML Day: Presenting the new strategy. Celia Marín PDF Video
• Sharing best practice. Bahija Gouimi PDF Video Webstream

• Engaging Our Policy-Makers, Max Family Malaysia. Li Li Gan PDF Video Webstream
• Smartphone app ROBIN, Hematon. Monique Wienen PDF Video Webstream
• Caring for the CML Family Caregiver, CML Busters FSG of California. Jerry Clements PDF Video Webstream
• PRO QOL of CML patients on different TKIs, Israeli CML Patient Organization. Giora Sharf PDF Video Webstream
• Study on Identifying The Needs Of Patients With CML In Colombia, Fundación Colombiana de Leucemia y Linfoma. Yolima Mendez Comacho PDF Video Webstream

Report from regional sessions; presentation of the new Steering Committee 2019-2020 PDF Video Webstream

Day 3:

Medical #4: Outlook on CML in 2023

• Future research: Asciminib, and other future drugs. Francois-Xavier Mahon PDF Video Web stream

• Discussion: State of 2023 in Western Countries: What will choice of therapy be like if all current TKIs will be generic? Debate of Gianantonio Rosti and Francois-Xavier Mahon PDF Video Webstream

• State of 2023 in LMI: How will CML diagnostics and therapy evolve in LMI? Do all TKI becoming generic change access in any way? Qian Jiang PDF Video Webstream

Advocacy #4: Living with CML

• Transition Care: Managing the transition from paediatric to adult care. Rod Padua and Yunus Borowczak PDF Video Webstream

• Side effect self-management. Robert J. Thomas PDF Video Webstream

• Psychosocial issues, anxiety, depression, dealing with grief, supporting carers. Panellists: Lisa Machado, Cristian Neves, Cornelia Borowczak, Gerald Clements Video Webstream

Best Poster Award, closing and farewell Video 

Horizons 2020: Costa Rica Presentation Video

– CML Steering Committee 2017-2019 –

The programme was 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. Thank you so much to all of you for your fantastic work these years to get a very successful CML Horizons 2019!

• Giora Sharf (Israel, co-founder of the CML Advocates Network)
• Jan Geissler (Germany, co-founder of the CML Advocates Network)
• Jana Pelouchová (Czech Republic, co-founder of the CML Advocates Network)
• Gail Sperling (the USA, region North America)
• Bahija Gouimi (Morocco, region Africa & Middle East)
• Zack Pemberton-Whiteley (the United Kingdom, region Western Europe)
• Sarunas Narbutas (Lithuania, region Central and Eastern Europe & West Asia)
• Mercedes Arteaga (Argentina, the region of Latin America)
• Rod Padua (the Philippines, region Asia-Pacific)

– 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 (Silver Spponsor)

The Leukemia & Lymphoma Society (Bronze Sponsor)

International CML Foundation (Bronze Sponsor)

See you again in #CMLHZ20!