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 

Back to the CML Horizons 2014 programme

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

Venue and Accommodation

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

Congress 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, giora@cmladvocates.net, Jan Geissler, jan@cmladvocates.net, Nicole Schröter nicole@cmladvocates.net

Register here - Preliminary Program - Conference fee -  Scholarship 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!

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) - PDF - Video-Webstream
   
3. 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)

Register here - Preliminary Program - Conference fee -  Scholarship 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 operations1bcn@liberty-iberian.com 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- avigail@alltours.co.il, Nimrod: email- Nimrod@alltours.co.il 
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 nicole@cmladvocates.net, Jan Geissler jan@cmladvocates.net and Giora Sharf giora@cmladvocates.net should you need any clarification about the conference programme, or see challenges in attending CML Horizons.

Register here - Preliminary Program - Conference fee -  Scholarship 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 nicole@cmladvocates.net, Jan Geissler jan@cmladvocates.net and Giora Sharf giora@cmladvocates.net should you need any clarification about the conference programme, or see challenges in attending CML Horizons.

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

Call for Abstracts: CML Advocacy Best Practice presentations at CML Horizons 2013

What is the Advocacy Best Practice Sharing session?

This year we have decided to do the best practice sharing in a plenary session, which will give you the opportunity to share your advocacy experience with all participants in a presentation.

The CML Advocacy Best Practice session, held on Saturday, May 4, 2013, will include very short presentations and concise, focused discussions on patient advocacy. The aim of the session is provide participants with the opportunity to share and discuss best practices with their peers. Participants are being invited to submit abstracts for this session. The CML Steering Committee will review the abstracts and select the best practices that will be presented during the session.

What is the format of the session?

The CML Advocacy Best Practice session consists of six short (maximum 8 minutes) plenary presentations each covering a different best practice. Over a one and a half hour period there will be 6 short presentations, followed by 5 minutes discussion.

Do presenters need to prepare slides for the best practice session?

We would recommendto prepare a small number of slides if it supports your presentation. The maximum number of slides should not exceed 5-6 slides.

How can I suggest to present in the CML Best Practice session?

Participants who would like to present in the session are invited to submit a short abstract (maximum 300 words) by email on an advocacy or capacity building initiative (not on your organization!).

Potential topics for presentation include, but are not limited to:

• Actions that solved a treatment access problem
• Advocacy networking - joining forces to address an advocacy challenge
• Reaching patients who are not online
• Working with volunteers
• Promoting wellness using complementary therapies
• Tools that facilitate communication with patients' families (eg. children)
• Conducting a patient survey
• Using guidelines as an advocacy tool
• Supporting caregivers

The presentation should NOT present your organisation but a successful initiative of yours, so other advocates can learn from your experience and potentially do something similar in their countries!

Submission Form

Please provide the following information and click on "submit" to submit your abstract:

Please submit your abstract using this form by 1 April 2013. If you have any questions, please contact Giora and Jan at info@cmladvocates.net.

What happens after I have submitted the abstract?

The CML Steering Committee will review the abstracts and select six for presentation during the CML Advocacy Best Practice session. If your abstract is not accepted for the advocacy best practice session, you can still bring a poster with you to the meeting to display in the poster area.

Participants will be informed three weeks before the conference, to give you enough time to prepare your session. The slides must be provided at least 9 days weeks prior to the conference, to be reviewed. Please note the number of slides should not exceed 6 slides.

Your CML Horizons Steering Committee

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

Application for Scholarship / Conference Grant

CML Horizons 2015 will take place in Barcelona, Spain. All participants are expected to cover their own travel costs to Barcelona and to pay a conference fee which covers accommodation, local transportation in Barcelona, food, drinks and the cost of the conference.

We encourage everyone to seek sponsors in early 2015 to cover those costs.
However we acknowledge that not everybody is able to find an organisation or sponsor to participate in the conference.

Therefore, a limited number of 25 scholarships, full or partial, are available for patient advocates who are interested in attending the conference and who cannot find sponsors for their attendance. Applications for these grants are invited from interested advocates. Those that are granted will receive an economy class return ticket to Barcelona and will not need to pay the conference fee.

Eligibility criteria

To be eligible for scholarship, candidates should:

• Be a staff member or volunteer of an established CML patient organization that is a member of CML Advocates Network,
• Be in a country where a local sponsor is unavailable to support attendance at the conference, or
• Be an individual who is in the process of setting up a CML patient organization where regulations prohibit local sponsoring his/her attendance at the conference.
• Hold a position where they can shape ongoing advocacy activities and initiate new ones
• Be proficient in English
• Preference will be given to applicants coming from countries with limited resources.

Scholarship types

We are offering two different types of scholarships, which will be given according to the needs of each applicant.

• Full scholarship: This scholarship will cover both the flight costs and an exemption from the conference fee.
• Partial scholarship: This scholarship will cover either the flight costs or the conference fee. 

Application procedure

Interested advocates should submit a completed application form by 16 March 2015. Please email your application to Natasa Kokir, email: cml2015@liberty-serbia.com

The CML Horizons Steering Committee members will review and prioritize all applications received by the application closing date. Applicants will be informed whether they will receive a grant, and whether it is a full or partial grant, by 23 March 2015.

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

Preliminary Programme of CML Horizons 2015

Confirmed faculty

• (to be announced soon)

Overall contact and programme coordination

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

Welcome to the CML Horizons 2015
Registration Website!

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

We are looking forward to the 13th "CML Horizons" conference held in Barcelona, Spain, on 1-3 May 2015. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community. The conference provides a unique opportunity for participants to share experiences and best practice. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their constituents and optimize their advocacy activities.

MEETING SCHEDULE

CML Horizons 2015 starts on Friday, 1 May 2015 at 10:30 AM with 2 parallel sessions (one session on "CML 101 / Horizons 101"  and one on "HTA 101" or "CML Advocates in Research"). This session will be followed by a welcome lunch and the official welcome of the conference. The conference ends on Sunday, May 3rd, 2015 with a farewell lunch from 13:00-14:00h.

The programme features world-renowned experts in CML and patient advocacy.

IN CASE OF QUESTIONS

Two Liberty Incentive & Congresses offices, one in Spain and the second in Serbia, are the logistics agencies that will handle all logistical issues of this conference. Please read carefully and contact the correct office depending on the type of question you have:

For all issues concerning registration, arrival and departure dates as well as scholarship requests please contact Natasha at Liberty Serbia: cml2015@liberty-serbia.com,  Tel: +381113625036 and mobile: +38162304072

For all issues concerning visas, hotel accommodation and transfers please contact Sara Guix from Liberty Spain:
operations1bcn@liberty-iberian.com, Tel: +34932890766

All Tours Travel is our travel agency and will do flights booking for speakers, steering committee members and grants receivers. Your contact for travel booking will be Avigail avigail@alltours.co.il or Nimrod nimrod@alltours.co.il, Tel- +97248670670.

Please contact Nicole Schroeter nicole@cmladvocates.net, Jan Geissler jan@cmladvocates.net and Giora Sharf giora@cmladvocates.net should you need any clarification about the conference programme or experience challenges in attending CML Horizons.

CML HORIZONS STEERING COMMITTEE

The programme has been governed by a global "CML Horizons Steering Committee" consisting of CML patient advocates from North America, Latin America, Asia, Europe, Middle East and Africa:

• 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)
• Jelena Čugurović (Serbia/Europe – ex-officio, non-elected volunteer).

DAY 1 - FRIDAY, 1 May 2015

Here you will find the video web streams of all CML Horizons 2015 sessions of DAY 1 (Friday).

Click on the play button to see and hear the presentation. Once the video plays, you can also click on the "full screen" button to improve readability of the slides. You can also download the PDF of the slides.

Welcome to Barcelona and to CML Horizons 2015

Giora Sharf (CML Advocates Network) and María Navarro (Spanish Patients' Forum) - PDF (Giora) - PDF (María)

Parallel pre-meeting: CML 101

Pat Garcia-Gonzalez  -  PDF

Parallel pre-meeting: Patient Involvement in CML Research

Patient involvement in CML research (Jan Geissler)  -  PDF
(No webstream available of this session)

Medical Session #1: CML Update

Overview CML 1st line, 2nd line, managing resistance

Michael Mauro  -  PDF

Managing CML in countries with limited resources

Hari Menon  -  PDF

Q&A with experts (Michael Mauro & Hari Menon)

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

Access to therapies 

Ananda Plate  -  PDF

Access to trials 

Zhengchen Liu  -  PDF

Access programs

Pat Garcia-Gonzalez -  PDF

Achieving reimbursement

Georges Sayde  -  PDF

DAY 2 - SATURDAY, 2 May 2015

Here you will find the video web streams of all CML Horizons 2015 sessions of DAY 2 (Saturdayay).

Click on the play button to see and hear the presentation. Once the video plays, you can also click on the "full screen" button to improve readability of the slides. You can also download the PDF of the slides.

Elections 2015 – Presentations of candidates for the CML Horizons Steering Committee

PDF - Nomination Forms

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

Treatment-free remission, stop trials, predictors for stopping treatment

Andreas Hochhaus  -  PDF

The patient perspective on treatment-free remission, including support needs

Pat Elliott  -  PDF

Panel discussion: The psychology of stopping treatment 

Pat Elliott + Michael Mauro + Andreas Hochhaus + Cristian Neves

Advocacy Session #2: World CML Day Toolkit

Introduction

Jan Geissler - PDF

Training & practical tips

Danielle Miller, ZN Consulting  -  PDF part 1/4 - PDF part 2/4 - PDF part 3/4 - PDF part 4/4

Medical Session #3: Living (long) with CML

Long-term side effect profiles of CML treatments, cardiovascular & thrombotic events

Andreas Hochhaus  -  PDF

Managing CML in children and young adults

Frederic Millot  -  PDF

Panel discussion: What is different for adolescent patients with CML?

Cornelia Borowczak, Rod Padua, Cristian Neves, Frederic Millot, Andreas Hochhaus