CML Horizons 2014 - Generics Session

CML-Landscape-Belgrade-2014-2

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

 

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 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)

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 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.

 

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 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.

 

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