CML Horizons 2014 - Conference fee

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Venue & Accommodation - Acknowledgements

 

Conference fee and travel costs for patient delegates

Patient advocates are expected to cover their own travel to  Belgrad airport (e.g. flights). Transport from the airport to the conference venue will be provided for free.

A conference fee of EUR 500 per delegate will be invoiced to the participant in the name of the Leukemia Patient Advocates Foundation, Switzerland, in advance of the meeting. Payment must arrive before the start of the conference. The fee will cover all costs including attendance at the conference, max. 3 nights of accommodation in a single room, local transport, catering, and Internet access in the conference room, etc. It will not cover incidental costs like bar, mini-bar, room WiFi, phone calls, taxi costs, upgrades for double rooms, relatives attending the conference, and any other non-official activities. The conference fee must also be paid in case of cancellations later than 30 days before the conference.
The conference fee should be paid by wire transfer to the foundation. Should another postal address be required on the invoice for the conference fee, the delegate must provide a note during the electronic registration process, stating the full postal address.

Conference fee and travel costs for representatives of the sponsors

Sponsors' delegates are also expected to register at the registration website. Room bookings will then be made by the logistics agency. Pharma representatives are expected to settle their room costs at the hotel. We will  organize their individual local transport  to the conference venue if you provide us with their flight details at least two weeks before the conference. Costs for attending the conference, including the daily delegate rate and all meals, will be covered by us and will not be invoiced to pharma representatives.

Questions?

Please contact Nicole Schroeter , Jan Geissler and Giora Sharf should you need any clarification about the conference programme, or see challenges in attending CML Horizons 2014.

 

CML Horizons 2013 - Learn. Share. Grow: Presentations and Web Streams

CMLHZ13-group-photoCML Horizons 2013

CML Advocacy: Learn. Share. Grow.
3-5 May 2013, Prague, Czech Republic

The "CML Horizons 2013" conference, held on 3-5 May in Prague (Czech Republic), was a great success. We were thrilled to welcome 141 participants from almost 60 countries. The conference has once again demonstrated the great power of the global community: inspiring best practice presentations, posters, marketplace sessions and Action Forum sessions - and excellent updates by CML experts. But the conference doesn't just provide scientific knowledge and advocacy skills, but much more - we feel that over the years, the community has developed a great collaborative spirit across borders and regions, and has become a unique global family.

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 "Video Stream" to see the full video web-stream of all sessions! Please note that the speakers have authorized CML Advocates Network to provide the PDFs on this website, but it is not allowed to upload them 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 note by star tenor and leukemia survivor José Carreras

European Session

  1. Introduction - Video Stream
  2. Health Technology Assessment
    • HTA and patient involvement from a European perspective (Martin Visnansky, Slovakia) -  PDF - Video Stream
    • HTA and CML: involvement in practice (David Ryner, UK) -  PDF - Video Stream
  3. Cross border healthcare in the EU (S. Narbutas, Lithuania) - Video Stream

Ideal World vs. Reality: New Challenges with Substandard Drugs & Generics

CML Update

  • Introduction (Zhenxi Zhong, China) - Video Stream
  • All available drugs from clinical/efficacy point of view - how do they compare?  (Gianantonio Rosti, Italy) -  PDF - Video Stream
  • All available drugs from a side effect point of view - how do they compare? (Dina Ben Yehuda, Israel) -  PDF - Video Stream
  • Most potent induction, or early escalation on the most affordable drug? Context of therapy optimization and costs (Tim Hughes, Australia) -  PDF - Video Stream

Path to cure and treatment-free survival

  • Does transplant still have a role? News in transplant? How to treat advance disease? Transplant+TKI combination? (Jane Apperley, UK) -  PDF - Video Stream
  • Latest experience from STOP trials (Tim Hughes, Australia) -  PDF - Video Stream
  • What is the "real" cure? Is stopping really a feasible approach? (Dina Ben Yehuda, Israel) -  PDF - Video Stream
  • Panel discussion - is stopping feasible or do we need to wait for new curative treatments? - Video Stream

Experts Market Place

  • Using the Internet for CML advocacy (Kris Griffin, "Access CML Drugs" Blog, UK) -  PDF - Video Stream
  • How to advocate to policy makers (Nicola Bedlington, European Patients' Forum) - PDF
  • Working with pharma (Sandy Craine, CML Support UK; Helen Roberts, Novartis Oncology) - PDF1, PDF2
  • How to run a patient group meetingPDF (Viji Venkatesh, Markus Wartenberg)

CML in Real Life – Quality of life, adherence and pregnancy

  • CML and Quality of Life: What is the impact of life-long CML therapy on Quality of Life? (Fabio Efficace, Italy) -  PDF - Video Stream
  • Results from our global CML Advocates Adherence Survey (Giora Sharf, Israel) -  PDF - Video Stream
  • CML and pregnancy, how to plan a family (Jane Apperley, UK) -  PDF - Video Stream

Best Practice in CML Advocacy

  • Introduction (Jana Pelouchová, Czech Republic) - Video Stream
  • Rising Sun, a network of CML advocates from the Asia-Pacific region (Rod Padua, Philippines) -  PDF - Video Stream
  • Counselling sessions with haematologists as volunteers for patients (Milena Remic, Slovenia) -  PDF - Video Stream
  • Advocacy networking - joining forces with like-minded organizations to spread cancer awareness (Ferdinand Mwangura, Kenya) -  PDF - Video Stream
  • CML Life Africa (Bahija Gouimi, Morocco) -  PDF - Video Stream
  • What is my PCR? A global awareness campaign (Pat Garcia-Gonzalez, US) -  PDF - Video Stream
  • Quality of Life survey (Cheryl-Anne Simoneau, Canada) -  PDF - Video Stream

Monitoring and Guidelines

  • Introduction (Pat García-Gonzalez, US) - Video Stream
  • The basic monitoring before we can talk about "cure" (Katerina Machova-Polakova, Czech Republic) -  PDF - Video Stream
  • New and advanced monitoring techniques – and their costs (Tim Hughes, Australia) -  PDF - Video Stream
  • What do the treatment guidelines say? Update on the new ELN, NCCN recommendations (Gianantonio Rosti, Italy) -  PDF - Video Stream
  • Discussion: The (political and medical) importance of medical guidelines, how patient groups can contribute - Video Stream

Advocacy in Action: The Action Forum

  • How to increase engagement on World CML Day (Kathy Redmond, Erin Schwartz)
  • Increasing capacity in CML groups, introducing training (René Steuer) -  PDF - Video Stream
  • Call for better care: updating the Baveno declaration (Pat Garcia-Gonzalez)
  • Report of break-out-sessions - 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 2011-2013 was:

  • Anita Welborn (USA/North America)
  • Bahija Gouimi (Morocco/Africa)
  • Euszebius Jan Dziwinski (Poland/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, and Jan Geissler,

 

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 (Silver Sponsor)
  • Ariad (Silver Sponsor)
  • The Leukemia & Lymphoma Society (BronzeSponsor)
  • International CML Foundation (Additional supporter)
  • AsuraGen (Additional supporter)

CML Horizons 2014 - Travel

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Venue & Accommodation - Acknowledgements

 

Arrival and departure dates and times

Arrival date: Friday  2 May 2014

  • flights for advocates   should not land later than 9:00, as the European and other regional pre-meetings start at 10:30
  • It is recomended that advocates arrive on Thursday May 1st to be able to attend the regional pre-meetings
  • All conference participants meet for lunch on Friday 2 May at 12:30h. The global meeting starts at 14:00h.

Departure date: Sunday,  4 May 2014

  • Flights should not depart earlier than 16:30h; in case you like to participate in the city tour, then the flights should not depart before 21:30h

Visa

Please make sure that delegates have valid travel documents, and that you apply for visas early! Should you need an official invitation letter to obtain a visa, please let Natasa Kokir at    know well in advance.

Travel of patient advocates

Patient advocates are expected to book and cover their own travel to Belgrade airport (e.g. flights). Transport from the airport to the conference venue will be provided for free. A conference fee of EUR 500 per delegate will be raised. The fee will cover all costs including attendance at the conference, max. 3 nights of accommodation in a single room, local transport, food and drinks, and Internet access in the conference room, etc. It will not cover incidental costs like bar, mini-bar, room WiFi, phone calls, taxi costs, upgrades for double rooms, relatives attending the conference, and any other non-official activities.

After registration, please provide our logistics agency "Liberty", Natasa Kokir at  , with your travel details so we can arrange your local transport and accommodation accordingly. These details should be provided no later than 1 month before the meeting, or by April 3 ed, 2014.

In addition, travel grants are available for some advocates who are interested in attending the conference. Applications for these grants are invited from interested advocates. Those that are granted will receive an economy class return ticket and will not need to pay the conference fee. See the page on scholarships.

Travel of Steering Committee, receivers of travel grants, and speakers

We will book your flights for Steering Committee members, Grants recievers and speakers. Please do not book your own travel.

To arrange your filghts please contact our travel agency- All Tours, as soon as possible, and indicate your preferences for departure day and time, which airport, and airline. Also provide your prefered return day and time. The travel agency will try to book your flights according to your preferences, taking also into account costs.

Here are the contact details for All Tours Travel agency:

Avigail: email-       Nimrod: email-    You can contact anyone of these 2 agents.

Phone- Office- +972-48670670.

For emergencies- Avigail's mobile- +972-504265880,   Nimrod's Mobile- +972-504265878

Since flight rates are going up on a daily basis, if you are one of the participants whose flights will be booked by us, please contact the travel agency as soon as possible.

Travel of representatives of sponsors

Be aware that even though you need to book your own flights, we need your registration with flight details to be able to book your hotel room and arrange your transfers from teh airport to teh hotel.

Questions?

Please contact Nicole Schroeter , Jan Geissler and Giora Sharf should you need any clarification about the conference programme, or see challenges in attending CML Horizons 2014.

 

CML Horizons 2014 - Venue and Accommodation

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Venue & Accommodation - Acknowledgements

 

 

belgrade

Venue and Accommodation

City of Belgrade

Belgrade is the capital and the largest city of Serbia. It is located at the place where river Sava confluences into the river Danube, the place where the Pannonian Plain meets the Balkans. Translated into English it means White city.

The city has the population of 1.6 people living in it formally and informally about 2 million inhabitants making it one of the biggest cities of the Southeastern Europe.

Belgrade is known for its turbulent history and great nightlife for all ages.

The average temperature in May is 18 degrees C° (lowest is 12 and highest is 22 C°).

Belgrade City Tour

For those interested, we will be offering an optional 3 hours tour of the main attractions of Belgrade, on Sunday afternoon. This will not be a part of the program, and those who will like to join this tour will need to register at the hospitality desk at the hotel and pay the costs directly to Liberty- the logistic agency.

The congress venue: Metropol Palace Belgrade

Metropol, Luxury Gem of Belgrade

Stunning five star Belgrade hotel, the Metropol has always been the heart of Belgrade's social life and the host to all its most esteemed guests. Designed by famous Serbian architect Dragiša Brašovan and originally opened in 1957, the Metropol Hotel reopened in 2012 as Metropol Palace, a Luxury Collection Hotel. Located in the city center near the Serbian National Parliament, after a total renovation and a new design by MKV, Metropol Palace can now be considered the luxurious modern gem of Belgrade again.

From the moment you walk into the Metropol Palace, its wide lobby emanates a sense of peace and comfort that instantly relaxes and unwinds. Our sumptuous selection of accommodations provides distinct design and supreme luxury: 199 elegant guest rooms and 40 suites with magnificient view over the Tasmajdan park, are all generously furnished to accommodate all types of requirements, and complete with the latest in communications and entertainment technology.

Hotel website: http://www.metropolpalace.com/?PS=LGEN_AA_DEMA_CGGL_TPRP 

Address & Map:
Bulevar Kralja Aleksandra 69 · Belgrade 11000 · Serbia,  Phone: (381)(11) 3333100
see Google Maps

 

 

 

For any questions regarding the conference, please contact the conference coordinators Giora Sharf, and Jan Geissler,

 

CML Horizons 2014 - Learn. Share. Grow: Presentations and Web Streams

CMLHZ2014 Group pictureCMLHZ2014 PanelCML-Landscape-Belgrade-2014-2

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

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

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

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

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, and Jan Geissler,

 

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)

CML Horizons 2015 - Learn. Share. Grow: Presentations, web streams and photo gallery now available!

Group photo CMLHZ15-800Conference CMLHZ15-800CMLHZ15logo-720px

CML Advocacy: Learn. Share. Grow.
1-3 May 2015, Barcelona, Spain

From 1-3 May 2015, the CML Advocates Network welcomed 118 delegates (among them almost 30 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to its annual conference CML Horizons that this year was held in Barcelona (Spain). Delegates from 65 countries worldwide (Europe, North America, Asia, Africa, Middle East and Latin America) came to Barcelona to learn from medical experts, share best practice in patient advocacy and grow their organization’s capacity. Besides enlightening medical sessions and interesting panel discussions, for the first time an interactive poster session was held. Furthermore, at this year´s conference a new CML Horizons Steering Committee was elected.

CML Horizons is a fully community-run and multi-sponsored 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, photo gallery, video web streams and conference report are available now!

Click on "PDF" to see all presentations. If you wish to translate selected presentation, please contact Nicole at and ask for the powerpoint-file! This will make it easier for you to translate the presentation to the language of your choice.

To stream individual sessions click on "Web Stream" below. Alternatively, you can click on the following links where we have sorted all video streams by day:

Web Streams for Day 1 (Friday, 1 May 2015)

Web Streams for Day 2 (Saturday, 2 May 2015)

Web Streams for Day 3 (Sunday, 3 May 2015)

Please note that the speakers have authorized CML Advocates Network only to provide the PDFs on this website, but it is not allowed to 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! 

Welcome

  • Welcome to Barcelona, by Giora Sharf (CML Advocates Network) and María Navarro (Spanish Patients' Forum)  -  PDF & Web Stream (Giora) / PDF & Web Stream (María)

Parallel pre-meetings

  1. CML 101 (Pat Garcia-Gonzalez)  -  PDF & Web Stream
  2. Patient involvement in CML research (Jan Geissler)  -  PDF - session was not recorded! No webstream available!

Medical Session #1: CML Update

Advocacy Session #1: Advocacy examples on access to treatment & care

Elections 2015 – Presentations of candidates for the CML Horizons Steering Committee - PDF - Nomination Forms - Web Stream

Medical Session #2: Treatment-free remission: Opportunities and challenges

Advocacy Session #2: World CML Day Toolkit

Medical Session #3: Living (long) with CML

  • Long-term side effect profiles of CML treatments, cardiovascular & thrombotic events (Andreas Hochhaus)  -  PDF & Web Stream
  • Managing CML in children and young adults (Frederic Millot)  -  PDF & Web Stream
  • Panel discussion: What is different for adolescent patients with CML? (Cornelia Borowczak, Rod Padua, Cristian Neves, Frederic Millot, Andreas Hochhaus) - Web Stream

Advocacy Session #3: Marketplace of the regions - Interactive poster session

CML Horizons Steering Committee 2016-2017: Results of the elections - PDF

Advocacy-Session #4: Advocating on generics and fighting for quality of care

  • Introduction: How are drugs approved and monitored? (Nicole Schröter)  -  PDF & Web Stream
  • CML TKI register & Declaration on Generics (Jelena Čugurović)  -  PDF & Web Stream
  • Debate: Going from fear to action – what can advocacy do? (Pat Garcia-Gonzalez, Sandra Shaw, Jelena Čugurović, Hari Menon) - Web Stream

Medical Session #4: Future outlook and future ways to do CML research

  • Overview: Clinical Drug Development Process (Jan Geissler)  -  PDF & Web Stream
  • Beyond TKIs - addressing different pathways (Arnon Nagler)  -  PDF & Web Stream
  • Upcoming clinical trials (Michael Mauro)  -  PDF & Web Stream
  • Summary: What is the role of CML patient groups in developing the future of CML treatment? (Giora Sharf) - PDF & Web 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 2014-2015 was:

  • Gail Sperling (USA, region North America)
  • Bahija Gouimi (Morocco, elected representative region Africa & Middle East)
  • Mina Daban (France, elected representative region Europe)
  • 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)
  • Zhengchen Liu (China, elected representative region Asia-Pacific)

The new CML Horizons Steering Committee elected during the CML Horizons 2015 conference and appointed for the period 2016-2017 consists of the following representatives:

  • 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, or the scientific coordinators Giora Sharf, and Jan Geissler,

 

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

CML Horizons 2014 - Generics Session

CML-Landscape-Belgrade-2014-2

YouTube-Full Screen

To watch the video/slides in full screen, click on the "Full Screen" button on the bottom right of the video.

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 


 

CML generics from a patient perspective (Cheryl-Anne Simoneau)  -  PDF 


CML generics from a hematologist perspective (Andrija Bogdanovic)  -  PDF 


 

CML generics from a hematologist perspective (Qian Jiang)  -  PDF 

CML Horizons 2015 - Venue and Accommodation

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Elections - Venue & Accommodation - Acknowledgements

 

Venue and Accommodation

barcelona-metro

City of Barcelona

Barcelona is the capital city of the autonomous community of Catalonia in Spain and the country's 2nd largest city, with a population of 1.6 million. Its urban area has a population of around 4.5 million people, being the sixth-most populous urban area in the European Union after Paris, London, Madrid, the Ruhr area and Milan. It is the largest metropolis on the Mediterranean Sea.

Barcelona is one of the world's leading tourist, economic, trade fair and cultural centres, and its influence in commerce, education, entertainment, media, fashion, science, and the arts all contribute to its status as one of the world's major global cities

barc-fira1Congress venue: Renaissance Barcelona Fira Hotel

Address: Plaza De Europa, 50-52, Hospitalet De Llobregat Barcelona, Spain
http://www.marriott.com/hotels/travel/bcnrf-renaissance-barcelona-fira-hotel/

Barcelona City Tour on Sunday

For those interested, we will be offering an optional 3 hours tour of the main attractions of Barcelona, on Sunday afternoon. This will not be an official part of the program, and those who will like to join this tour will need to register at the hospitality desk at the hotel and pay the costs on site.

For any questions regarding the conference, please contact Giora Sharf, , Jan Geissler, , Nicole Schröter

 

CML Horizons 2015 - Acknowledgement of Sponsors

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Elections - Venue & Accommodation - Acknowledgements

 

Acknowledgement of Sponsors

We would like to thank the following sponsors for providing unconditional grants - without their support, this conference would not be possible:

  • Novartis Oncology (Initiating platinum sponsor)
  • Bristol-Myers Squibb (Gold Sponsor)
  • Pfizer (Gold Sponsor)
  • Ariad (Silver Sponsor)
  • Leukemia & Lymphoma Society (Bronze Sponsor)
  • The International CML Foundation (iCMLf)

If you want to support the conference, we would be delighted!

 

 

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

CML-Logotip-Ljubljana-2016-5

 

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

  1. Welcome from Milena Remic (Slovenian Lymphoma and Leukemia Patient Association) - PDF - Video-Webstream
  2. Keynote by Tanja Fajon - Video-Webstream
  3. Update on the CML Advocates Network (Jan Geissler) - PDF - Video-Webstream

Advocacy Session #1: Patient Advocacy in Research

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

Medical Sessions #1: CML State of Play and Future

  1. ELN Recommendations on treatment choice and response (Gianantonio Rosti) - PDF - Video-Webstream
  2. Imatinib and Ponatinib - two ends of the spectrum in 2016's reality? (Steve O’Brien) - PDF - Video-Webstream
  3. Switching treatments in suboptimal response and intolerance: What to take when? (Daniela Zackova) - PDF - Video-Webstream
  4. Debate on state of play 2016 in CML therapy (Gianantonio Rosti, Daniela Zackova, Steve O'Brien) - PDF
  5. 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”

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

Medical Session #2: Stopping Treatment

  1. Introduction of Oxford Style Debate (Giora Sharf) with pre-debate vote on the motion that is either for, against or undecided - PDF - Video-Webstream
  2. Oxford Style debate on stopping CML treatment
    1. Gianantonio Rosti – Opening presentation, “in favour” - PDF - Video-Webstream
    2. Steve O’Brien – Opening presentation, “against - PDF - Video-Webstream
    3. Debate with the audience - PDF - Video-Webstream

Advocacy Session #3: Financial Management

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

Medical Session #3: CML at Both Ends of Life

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

Advocacy-Session #4: "World CML Day" - Training and Best Practice

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

Medical Session #4: Diagnostics and Monitoring

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

Advocacy-Session #5: Psychological Issues

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

Distribution of presentations and videos

If you wish to translate selected presentation, please contact us at . 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, or the scientific coordinators Giora Sharf, and Jan Geissler,

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)

CML Horizons 2015 - Travel

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Elections - Venue & Accommodation - Acknowledgements

 

Arrival and departure dates and times

Arrival date: Friday 1 May 2015

  • flights for advocates should not land later than 9:00, as the Friday morning parallel sessions start at 10:30
  • It is recommended that advocates from outside of Europe arrive on Thursday April 30 to be able to attend the pre-meetings
  • All conference participants meet for lunch on Friday 1 May at 13:00h. The global meeting starts at 14:00h.

Departure date: Sunday, 3 May 2015

  • Flights should not depart earlier than 16:30h; in case you like to participate in the city tour, then the flights should not depart before 21:30h

Visa

Please make sure that delegates have valid travel documents, and that you apply for visas early!
See our "Visa" section for more information.

 

Travel of patient advocates

Patient advocates are expected to book and cover their own travel to Barcelona airport (e.g. flights).

A limited number of travel grants (scholarships) are available for some advocates who are unable to find their own travel and the conference fee (see section on scholarships)

Transport from the airport to the conference venue will be provided for free.

After registration, please provide our logistics agency "Liberty Spain" Sara Guix  with your travel details so we can arrange your local transport and accommodation accordingly. These details should be provided no later than 1 month before the meeting, or by April 3, 2015.

 

Travel of Steering Committee members, receivers of scholarships, and speakers

We will book your flights for Steering Committee members, those that receive a scholarship, and speakers. Please do not book your own travel, as we will not reimburse flights booked on your own.

To arrange your flights please contact our travel agency All Tours as soon as possible, and indicate your preferences for departure day and time, which airport, and airline. Also provide your preferred return day and time. The travel agency will try to book your flights according to your preferences, taking also into account costs.

Here are the contact details for All Tours Travel agency:

Avigail: email- , Nimrod: email-  
You can contact anyone of these two agents.
Phone- Office- +972-48670670.

For emergencies: Avigail's mobile- +972-504265880,   Nimrod's Mobile- +972-504265878

Since flight rates are going up on a daily basis, if you are one of the participants whose flights will be booked by us, please contact the travel agency as soon as possible.

Travel of representatives of sponsors

Be aware that even though you need to book your own flights, we need your registration with flight details to be able to book your hotel room and arrange your transfers from the airport to the hotel.

Questions?

Please contact Nicole Schroeter , Jan Geissler and Giora Sharf should you need any clarification about the conference programme, or see challenges in attending CML Horizons.

 

CML Horizons 2015 - Conference fee

CML-Landscape-Belgrade-2014-1

Register here - Preliminary Program - Conference feeScholarship Application
- Travel - Visas - Elections - Venue & Accommodation - Acknowledgements

 

Conference fee for patient delegates

A conference fee of EUR 500 per delegate will be invoiced to the participant in the name of the Leukemia Patient Advocates Foundation, Switzerland, in advance of the meeting. The conference fee covers

  • max 3 nights of accommodation,
  • local transportation from Barcelona airport to the conference,
  • food and drinks (breakfast, lunch and dinner),
  • internet in conference rooms,
  • general costs of the conference.

Participants are expected to cover their own travel to Barcelona airport (e.g. flights). The conference will also not cover incidental costs like bar, mini-bar, room WiFi, phone calls, taxi costs, upgrades for double rooms, relatives attending the conference, and any other non-official activities.

Payment of the conference fee must arrive before the start of the conference. It must also be paid in case of cancellations later than 30 days before the conference. The conference fee should be paid by wire transfer to the foundation. Should another postal address be required on the invoice for the conference fee, the delegate must provide a note during the electronic registration process, stating the full postal address.

For those that cannot find organisations or sponsors to cover the costs to attend the conference, see our Scholarship page.

Conference fee and travel costs for representatives of the sponsors

Sponsors' delegates are also expected to register at the registration website. Room bookings will then be made by the logistics agency. Pharma representatives are expected to settle their room costs at the hotel. We will organize their individual local transport  to the conference venue if you provide us with their flight details at least two weeks before the conference. Costs for attending the conference, including the daily delegate rate and all meals, will be covered by us and will not be invoiced to pharma representatives.

Questions?

Please contact Nicole Schroeter , Jan Geissler and Giora Sharf should you need any clarification about the conference programme, or see challenges in attending CML Horizons.

 

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