advocates

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    The Leukemia Patient Advocates Foundation is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives & survival of patients affected by Leukemia. It is a platform for discussions & best practice sharing to Leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, policy, treatment and care. It also acts as a platform for patient organisations concentrating on educating, connecting and supporting patient group leaders.

    The foundation acts as a legal platform for self-sustained patient advocacy networks: The CML Advocates Network (123 patient organisations in 93 countries), the MPN Advocates Network, the CLLAdvocates Network and the Acute Leukemia Advocates Network (ALAN).

    Vision and Mission of the Leukemia Patient Advocates Foundation

    Our vision is a world in which all leukemia patients have access to the best treatment, care and support available.

    Our mission is:

    • To improve the lives and survival rates of patients affected by leukemia, as well as their relatives, worldwide
    • To support patient leaders in providing help and support to leukemia patients and their relatives
    • To provide a platform for education and best practice sharing of leukemia patient groups worldwide
    • To collaborate with other stakeholders involved in research, treatment and care of leukemia patients

    The Leukemia Patient Advocates Foundation hosts the global CML Advocates Network, MPN Advocates Network, CLLAdvocates Network and the last one, the Acute Leukemia Advocates Network (ALAN).

    CML Advocates Network

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    Hosted by the Leukemia Patient Advocates Foundation, the global "CML Advocates Network" (https://cmladvocates.net) connects 123 patient organisations in 93 countries on all continents. The CML Advocates Network is a worldwide network designed and run by CML patients and carers who are registered patient group advocates and organisers.

    The Leukemia Patient Advocates Foundation hosts the "CML Horizons" conference as the annual global leadership meeting that welcomes patient leaders from all world regions (https://www.cmladvocates.net/cmlhorizons). An elected "CML Horizons Steering Committee", as a steering committee (as defined in the foundation's statutes) within the Leukemia Patient Advocates Foundation, carries all responsibility to run the "CML Horizons" conferences. Following elections by the worldwide CML community in May 2019, the CML Horizons Steering Committee consists of the following nine members of which six are CML patients themselves, and which represent all major regions of the world.

    • Sarunas Narbutas (Lithuania, Central and Eastern Europe & West Asia region representative; Chairman of the CML Advocates Network)
    • 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)
    • Bahija Gouimi (Morocco, Middle East & Africa region representative)
    • Lisa Machado (Canada, North America region representative; Treasurer of the CML Advocates Network)
    • Felice Bombaci (Italy, Western Europe region representative)
    • José Castro (Costa Rica, Latin America region representative)
    • Rod Padua (Philippines, Asia-Pacific region representative)

    The management is supported by the Executive Director, Denis Costello with our Programme Managers Celia Marín  and Lidija Pecova t

     

    MPN Advocates Network

    mpn-advocates-logoHosted by the Leukemia Patient Advocates Foundation, the global "MPN Advocates Network" (https://www.mpn-advocates.net) was founded by representatives from the Netherlands, Spain and the UK. The MPN Advocates Network's immediate goal is to increase the international scope of the organisation by contacting MPN patient groups in other countries and inviting them to become part of the network. The initial focus will be groups in Europe, but the intention is to be a worldwide organisation.

    The MPN Advocates Network hosts the "MPN Horizons", the international conference for MPN patient advocacy leaders, works on educating patient advocates, building patient groups’ capacity, implementing advocacy initiatives with a real impact in the countries and finally enforcing cooperation in the global “MPN Advocates Network”.

    A Steering Committee within the Leukemia Patient Advocates Foundation carries all responsibility to run the MPN Advocates Network. The members of the Steering Committee are:

    • Chairperson: Jon Mathias, London UK
    • Vice Chairperson: Peter Loffelhardt, Barcelona/Switzerland
    • Secretary/Treasurer: Cheryl Petruk, Canada
    • Giora Sharf, LePaf Representative, Israel
    • Felice Bombaci, Italy
    • Lexi Moore & Michelle Woehrle , USA
    • Mirjana Babamova, Macedonia
    • Robi Zelig, Israel
    • Werner Zinkand, Germany

    Giora Sharf (Israel), as a trustee of the Leukemia Patient Advocates Foundation, supervises the finances of the MPN Advocates Network and its compliance with Swiss Regulatory requirements regarding the non-profit status.

    For more information, please visit the MPN Advocates Network website

    CLL Advocates Network

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    Hosted by the Leukemia Patient Advocates Foundation, the establishment of the CLLAdvocates Network (CLLAN) (https://www.clladvocates.net) and commencement of the new network’s activities aims to ensure the successes seen in CML are replicated for CLLand common goals are shared. The CLLAdvocates Network (CLLAN) was founded by representatives from Canada, Czech Republic, France, Israel, Portugal, UK and the United States. The CLLAdvocates Network Steering Committee consists of the following 8 members, of which 3 are CLLpatients and one a carer. The other members are CLLpatient advocates:

    • Nick York, UK - Interim Chair
    • Pierre Aumont, France - Vice-Chair
    • Jana Pelouchova, LePAF Rep, Czech Rep. - Treasurer
    • Michael Rynne, Ireland - Communications Officer
    • Felice Bombaci, Italy
    • Brian Koffman, United States of America
    • Deborah Baker, Canada

    The CLLAdvocates Network’s immediate goals include connecting across the globe with CLLpatient groups, CLLpatient advocates and patient organisations supporting blood cancer patients including CLL.

    The CLLAdvocates Network hosts the "CLLHorizons", a unique opportunity for CLLpatient organization representatives to meet and network, giving them the opportunity to discuss issues facing CLLpatients and hopefully start to think about what they could do better to help CLLpatients in their communities. 

    Acute Leukemia Advocates Network  (ALAN)

    ALANThe newest patient advocates network within the Leukemia Patient Advocates Foundation is the Acute Leukemia Advocates Network (ALAN)  (https://acuteleuk.org).

    The ALAN is an independent global network of patient organisations representatives and patient organisations, dedicated to

    • changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area by developing patient information and specific support for patients with acute leukemias and their carers in all countries; 
    • strengthening patient organisations by sharing best practices and providing toolkits in patient advocacy;
    • creating awareness about acute leukemias and how to better support leukemia patients; advocating for better treatment, care & access to healthcare services;
    • improving education for healthcare professionals serving leukemia patients as well as collaborating with other initiatives and stakeholders with similar goals.

    Similar to the CML Advocates Network, MPN Advocates Network and CLLAdvocates Network within the LePAF, the ALAN is not a network mainly targeting (english-language) patients and carers directly, but acts as a “network of organisations”. It aims to build capacity in the members of the network to deliver tailored services to acute leukemia patients and carers on the national level, while joining forces between organisations on the policy and research level across countries.

    The first ALAN Steering Committee consists of the following patient advocates:

    • Zack Pemberton-Whiteley, Chair (UK)
    • Anita Waldmann (Germany)
    • Sophie Wintrich (UK)
    • Jan Geissler (Leukemia Patient Advocates Foundation representative)

    Board of the Leukemia Patient Advocates Foundation

    The foundation's statutes mandate the foundation board only with supervisory and financial management roles, while its statutory committees, as listed above, are fully self-governed, autonomous initiatives. Projects are run by the committees, not by the foundation board. Formally, the Leukemia Patient Advocates Foundation is represented by the following trustees of the Foundation:

    • Jana Pelouchová (President, Czech Republic)
    • Jan Geißler (Vice President and Managing Director, Germany)
    • Giora Sharf (Treasurer, Israel)
    • Erik Aerts (Board Member, Switzerland)

    Registered Address & Contact Details

    We are purely patient-run, non-profit and public interest, and we have no legal department. Talking to each other first is always the best solution. If you see a challenge for whatever reason, please contact us directly - we are very confident any issue can be solved.

    Leukemia Patient Advocates Foundation
    P.O.B. 453
    CH-3000 Bern 7
    Switzerland
    Registration: Chamber of Commerce of Canton Bern, Switzerland – CH-036.7.052.001-2

    Written correspondence is preferred to be sent to the following address:

    LeukaNET e.V.
    Am Rothenanger 1b
    85521 Riemerling
    Germany
    Email:

     

     

     

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    The CML Advocates Network Story

    The CML Advocates Network is an active network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 123 patient organisations in 93 countries on all continents. It was set-up and is run by CML patients and carers. Its aim is to facilitate and support best practice sharing among patient advocates across the world.

    The idea to form the CML Advocates Networkwas first discussed in 2005 during the 4th International "New Horizons in Cancer" conference in Dublin for CML & GIST patient advocacy groups. Since their initiation in 2002, the "New Horizons" annual conferences have become a key networking event and a platform for best practice and knowledge sharing for CML and GIST patient groups from all five continents. Presentations by expert clinicians, medical professionals and patient group organizers enable the sharing of the most up to date clinical information, of best practice in patient advocacy as well as of hands-on experience, e.g. and on how to run patient advocacy organisations. The CML Advocates Networkwebsite was then set up in 2007 to keep the international networking going also after the annual meetings, as well as to bridge geographical distances between patient leaders.

    The network was initiated by four patient groups from Germany, UK, Czech Republic and Israel, facilitated by an unrestricted grant from Novartis. It is run independently by CML patients and hosted by the patient-run Leukemia Patient Advocates Foundation. The website has turned out to be a very powerful tool to support patient leaders around the world, to provide a knowledge base on CML advocacy, and to facilitate best practice sharing.

    We welcome members from all CML patient group organizations throughout the world to become part of the CML Advocates Network

    Our Objectives

    The four main objectives of the CML Advocates Network are:

    The website does not intend to be a platform for public discussions. Hence interactive functionality is mainly being offered in a non-public, member-only area which is accessible by registered representatives of leukemia patient groups only. 

    Our Team

    The CML Advocates Network is run by the elected CML Steering Committeecomposed of six CML patient advocates representing the major regions of the world plus the three co-founders of the network. The management is supported by the Executive Director with our Programme Managers.

    - The CML Steering Committee -

     

    Sarunas Narbutas

     
    SARUNAS NARBUTAS

    Chairman of the CML Advocates Network. 

    President of Lithuanian Cancer Patient Coalition (POLA).

    Region Central and Eastern Europe & West Asia Representati

     

      

    jana low 

     

    JANA PELOUCHOVÁ

    Co-founder of the CML Advocates Network.

    President of Diagnoza Leukemie, Czech Republic.

     

     

     

    Giora web

     

     

    GIORA SHARF

    Co-founder of the CML Advocates Network.

    Director of Flute of Light, Israel.

     

     

     

    JAN Low

     

     

    JAN GEISSLER

    Co-founder of the CML Advocates Network.

    Chair of LeukaNET, Germany

     

     

     

     

     

     felice1 

     

    FELICE BOMBACI

    Chairman of the Gruppo AIL Pazienti Leucemia Mieloide Cronica, Italy.

    Region Western Europe Representative

     

     

     

    lisa2 

     

    LISA MACHADO

    Treasurer of the CML Advocates Network

    Canadian CML Network Executive Director, Canada.

    Region North America Representative.

     

     

     

     

    Bahija Low

     

     

     

    BAHIJA GOUIMI

    President of the Association AMAL, Morocco.

    Region Middle East & Africa Representative.

     

     

     

     

    jose3 

     

    JOSÉ CASTRO

    Fundraiser, Legal and Scientific Affairs of AGALEMO, Asociación Amalia y Glenn Dewey para Pacientes con Leucemia y Mieloma, Costa Rica.

    Region Latin America Representative.

     

     

     

    ROD Low 

     

    ROD PADUA

    President of Touched By Max, Philippines.

    Region Asia-Pacific Representative.

     

     

     

     

     

     - The team -

    Denis webpage 1

     

     

    DENIS COSTELLO

    Executive Director of the CML Advocates Network

     

     

     

     

    Celia

     

     

    CELIA MARÍN

    Programme Manager of the CML Advocates Network

     

     

     

     

    lidija 3

     

     

    LIDIJA PECOVA

    Programme Manager of the CML Advocates Network

     

     

     

    Our Audience

    Visitors of the website are

    • Patient advocates leading leukemia support groups, aiming to get in touch with other national groups, and to share experience in advocacy in the member area
    • Patients and their relatives to locate support groups, e.g. in their home country or in other countries
    • Health professionals and carers who are interested in key issues of the CML patient community.

    The website does not aim to provide information to medical professionals. Hence, the website is provided in plain, patient-friendly language, and is hesitant in using medical terms.

    Features for members

    Most of the website's content, including news from the network, the CML glossary, the CML trial registry and CML-related information are openly accessible.

    The member area is only accessible to registered members and requires a login. A login account can be provided by the moderators of the website after registration. The moderators will then check whether the applicant is representing a leukemia patient organization.

    Access to the member-only area is only granted leaders of patient organizations, not to individual patients or non-patient stakeholders. The reason is that the main goal of the network is to link up patient advocates and to facilitate best practice sharing in CML advocacy. However, we invite individual patients to use our website to search for a local patient organization in their country.

    The following functionality is available to registered members:

    • Discussion forums, with subforums e.g. on advocacy, on how to set up patient websites, what activities the groups have, share their successes and failures that they encounter, so all the others can learn from these experiences, etc.
    • Download area for files, e.g. conference material.

    Legal disclaimer

    The maintainers of this website have no medical qualifications and the information contained on this site is not intended to replace expert medical advice that you may be given. We do our best to ensure that any information we publish is accurate and strongly advise that any decisions about your treatment should be made after discussions with your haematologist or other suitably qualified medical professional.

    We are purely patient-run, non-profit and public interest. Talking to each other is always the best solution. Before taking any legal action against us for whatever reason, please contact us - we are very confident we can solve any issue in both interests without the need for any legal steps.

    How to contact us

    This website - and the CML Advocates Network - is formally hosted by the "Leukemia Patient Advocates Foundation", a global patient-led non-profit foundation registered in Switzerland. The foundation is connecting leukemia patient organizations on all continents to strengthen their advocacy work. Its mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support.

    You can get in touch with us at

    You can also use the Contact us website. We're happy to receive your feedback or enquiry!

    The formal responsibility of this website belongs to the following organisation:

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    Leukemia Patient Advocates Foundation
    P.O.B. 453
    CH-3000 Bern 7
    Switzerland

    The trustees of the Leukemia Patient Advocates Foundation are Jana Pelouchová (President), Giora Sharf (Treasurer), Jan Geissler (Vice President and Managing Director) and Erik Aerts.

    Technology

    The website was built on free software and is hosted and maintained on a low-cost basis. This was to make sure the website does not require significant funding after its initial set-up. The website was set up using the Open Source Software Joomla. We would like to thank the enthusiasm of those engaged in Open Source Software. This project would have never been possible without open source projects and their communities!

     

  • CONTACT INFORMATION:

    Mailing/Postal Address:
     

    Cite1600 logements bloc135 appartement 5 khroub

    025200 Constantine

    Country

    Algeria

    Tef: 002132699100

    Fax: 0021337860227

    E-Mail: 
    Web: http://lmcalgeria.blogspot.com

     

    KEY CONTACT:

    Mr Khaldoun Wahid, Vice President

    BRIEF DESCRIPTION OF ORGANIZATION:

    Non-profit organization created in 2013 by and for CML patients what is the first and only CML patient’s association in Algeria.

    KEY OBJECTIVES AND KEY INITIATIVES OF ORGANISATION

    Our goals

    1-Patient’s support

    2-Patient’s advocacy

    3-Patient’s education

    4-Reach the maximum number of patients on a national scale: Make a national project

    Number of members or patients organisation represents today

    153

     

  • American Society of Hematology logo.svg 1 Tyrosine kinase inhibitors (TKI) have dramatically improved survival of CML and made it a chronic disease. However, life-long therapy is still advised according to expert recommendations and the product labels of current TKI treatments. Depending on the choice of TKI, about 40-70% of CML patients reach a deep molecular response, meaning a BCR-ABL ratio of 0.01% (MR4) or below. Given it had been observed that some patients were able to stop treatment in deep remission without a recurrence of the disease, the effectiveness of stopping TKI treatment of CML patients at large having a sustained, deep molecular response is a key question that is being investigated in various studies, and is probably the most debated CML topic at this year’s ASH.

    We are summarizing the most important presentations, discussions and posters on that important topic at the ASH congress this year.

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    The American Society of Hematology’s annual meeting brings together hematologists from around the world to discuss critical issues in hematology, examines the latest clinical advances in this area and explores the year's most significant scientific discoveries and updates.

    Jan Geissler, Co-founder of the CML Advocates Network and chair of the German leukemia patient platform Leukaemie-Online has been interviewed by the Video Journal of Hematological Oncology. during ASH 2016 on some of the hot topics at ASH 2016.

    We are happy to share with you these short video interviews that highlight a CML patient’s view on the safety of stopping treatment in Chronic Myeloid Leukemia, the new BCR-ABL inhibitor ABL001 for CML treatment, generic Imatinib in the age of Imatinib patent expiration, patient involvement in th ASH congress, as well as some European programs and initiatives in hematology like HARMONY and the European Reference Network EuroBloodNet.

  •  

    - Written by Sharf Giora, CML Advocates Network -

    ASH 2017 is the 10th ASH conference I am attending in a raw, and I am being asked many times why do I like this conference and travel such a long distance to attend it every year.

    AshGiora1The main reason that I, as a patients representative, leave home and travel to ASH is to hear and learn about the last innovations in the treatment of blood cancers and bring these news to patients in my country and across the globe, to empower them with knowledge, and mainly hope. that research in the various diseases is ongoing and if they are in a need for a new treatment, maybe it is just around the corner. The second reason why I go to ASH, which is not less important, is that this is the best place and opportunity to meet in a short time all the stakeholders that I am working with, like Drs and scientists from Israel and the globe, Pharma representatives from medical and patients relations, and other patients advocates, and to discuss with all of them how to continue and strengthen our collaboration.

    - Giora and Nadav, a board member of
    Flute of Light at ASH 2017  -
  • 15493828 10210998051774712 1390580387857235130 o

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    THE EUPATI PATIENT EXPERT TRAINING COURSE IS TAILORED TO PATIENT ADVOCATES AND TURNS THEM INTO PATIENT EXPERTS IN MEDICINES RESEARCH AND DEVELOPMENT.

    DEADLINE FOR APPLICATIONS IS 31 MARCH 2017

     

    The EUPATI Patient Expert Training Course in Medicines Research & Development is an exciting and unique opportunity, offering patient advocates expert-level training that is specifically tailored for them. 

    This 14-month tailor-made course, based on e-learning with additional two face-to-face training weeks, gives you the tools as CML patient advocate leaders to be able to contribute to be part of the research and development process and all related regulatory processes. It helps to understand all processes of pre-clinical and clinical research, drug safety, benefit/risk assessment and health technology assessment at an expert level.

    IMG 0348So far, three CML advocates members have participated in the EUPATI course: Conny Borowczak, Aimo Stromberg and Sarunas Narbutas. Read about Conny's experience by clicking on "Read more", and contact them if you have questions.

    We encourage European patient advocates (from the wider European region as defined by WHO) to apply before the deadline of 31st March at https://www.eupati.eu/third-cycle-apply-now/

     

     Click on read more for Testimonial.

  • Word Art 1

    Patients wishing to participate in a clinical study often look for a central source of information where they can find easy-to-understand facts on ongoing trials. 

    Official trial registries like clinicaltrials.gov or other trial registries are available but tend to be complex and difficult to use for patients.

    To fill the need for a single source of information on CML studies in plain language, CML Advocates Network set up an unofficial online CML Trials Registryin 2013.

    The database contains a brief description of ongoing CML trials initiated by academia (universities) or pharmaceutical companies.

    Currently, 24 clinical studies are listed that are actively recruiting patients. Another 11 studies are still ongoing but no longer including new patients.

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    Join us for the 15thCML Horizons: Learn. Share. Grow" Conference
    DATE: 26TH TO 28TH MAY 2017
    LOCATION: FRANKFURT, GERMANY

    download

    Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians. 

    This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization. 
     
    Registration process will start the 2nd week of January 2017 and will inform you as soon as the registration platform is online.

  • CML-Logotip-Frankfurt-2017-2

     

    Register here - Preliminary Program - Conference feeScholarship Application
    - Call for Abstracts - Call for Posters - Travel - Visas - Venue & Accommodation - Acknowledgements - Call for Nominations

     

    Registration is now open - Join us for the 15thCML Horizons: Learn. Share. Grow" Conference

    DATE: 26TH TO 28TH MAY 2017
    LOCATION: FRANKFURT, GERMANY

    download

    Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians. 

    This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization. 
     
     

    Register Now!

     


     

  • CML Logotip Warsaw 2018 2

     

    Register here - Preliminary Program - Conference feeScholarship Application
    - Call for Poster Presentation Abstracts - Travel - Visas - Venue & Accommodation - Acknowledgements 

     

    Registration is now open - Join us for the 16th “CML Horizons: Learn. Share. Grow" Conference

    DATE: 4TH to 6th MAY 2018
    LOCATION: WARSAW, POLAND

    poland

    Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians. 

    This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization. 
     
     

    Register Now!

     

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  • CML Logotype Nairobi 2019 2

     Register here - Preliminary Program - Conference feeScholarship Application

    Call for Poster - Call for Nominations Travel - Visas - Venue & Accommodation - Acknowledgements  

    Registration is now open - Join us for the 17th “CML Horizons: Learn. Share. Grow" Conference

    DATE: 17th to 19th MAY 2019
    LOCATION: Lisbon, Portugal

    00052129662 Large 2

    Due to events beyond our control and with sad regret we have changed the location of this year's Horizons. Even though location has been changed  to Lisbon, Portugal this does not take away from why we had chosen Nairobi as our original destination and that is to honour our dearly departed Ferdinand Micho who was a leader in the fight of CML in Africa and the Middle East but also for the challenges that CML patients face in low and middle-income countries in access to treatment and monitoring.

    We have secured top speakers from Western countries like Dr. Francois Mahon & Dr. Gianantonio Rosti, also African and Asian countries such as Dr. Qian Jiang from China, Dr. Abinya from Kenya and Dr. Benneh from Ghana. More speakers are expected to confirm soon.

    The CML Horizons conference is dedicated to the development of our members as patient advocates and deals with topics such as: - What is the goal of CML Treatment? Improving access, Key initiatives in CML treatment & advocacy and Living with CML and the future outlook. Dealing with these types of questions is the essence of Learn. Share & Grow and our conference offers the opportunity to support and facilitate the quality of education. This one of a kind conference also provides opportunities to be able to exchange ideas, interact & share best practice and provide a platform to start networking across borders, build alliances and so much more for you to bring back to your own organization.

    We very much hope that you will be able to attend the 17th conference of its kind - with an exciting program on CML advocacy and CML science.

    Our conference will provide you with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy and learn from the experts - both patient advocates and physicians by networking opportunities with CML advocacy leaders around the globe.

     

    CLICK HERE TO REGISTER

     

    REGISTER 1

     

     

     

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  • CML Logotip Costa Rica 2020 1

     Register here - Preliminary Program - Conference feeScholarship Application

    Call for Poster Call for Nominations Travel- Visas- Venue & Accommodation - Acknowledgements  

     

    Acknowledgment 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)  novartis
    Bristol-Myers Squibb (Gold Sponsor) BMS
     

    Pfizer (Gold Sponsor)

     Pfizer
     

     

    Incyte Biosciences International Sàrl (Gold Sponsor)

     

     Incyte 2CPos RGB1
    Takeda Oncology (Silver Sponsor) Takeda Oncology logo
    The Leukemia & Lymphoma Society (Bronze Sponsor) LLC

    International CML Foundation (Bronze Sponsor)

    iCMLf

     

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

     

     

     

     

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  • CML Logotip Costa Rica 2020 1

     Register here - Preliminary Program - Conference feeScholarship Application

    Call for Poster Call for Nominations Travel- Visas- Venue & Accommodation - Acknowledgements  

     

     

    Call for nominations for the regions of Asia & Pacific and Latin America of the CML Horizons Steering Committee.

     

    At CML Horizons 2019, the community elected its fifth global "CML Horizons Steering Committee", consisting of CML patient advocates from North America, Middle East and Africa, Western Europe, Latin America, Asia & Pacific and Central and Eastern Europe & West Asia regions.

    Our Steering Committee is made up of expert CML Patient Advocates and Is intended to serve as a leading team member for the CML community by providing support and help to implement CML Horizons annual meetings, as well as other projects, led by the CML Advocates Network. 

    The current term CML Horizons Steering Committee from Asia & Pacific and Latin America is coming to an end at "CML Horizons 2020" in Costa Rica, and hence we would like to ask the community to nominate candidates for the upcoming elections. If you are from these regions, this is your opportunity to become an active and professional CML Patient Advocate and empower yourself as well as your region. If you feel you can contribute, please submit your nomination.

    The CML Horizons Steering Committee consists of one elected representative from each of the six major regions:

    • Asia & Pacific
    • North America
    • Latin America
    • Middle East & Africa
    • Western Europe
    • Central and Eastern Europe & West Asia

     plus, the three CML Advocates Network founders as permanent committee members.

     Deadline for nominations: 15th April 2020

    To nominate a candidate for the election of the "CML Horizons Steering Committee 2020-2023", we would like to ask your patient organisation to submit the nomination form by 15th April 2020 to 

    The nomination needs to state your motivation and contribution to the committee on behalf of your region, your history and vision as CML advocate, your English language skills, and whether you are willing to commit significant time for teleconferences, meetings and emails to bring the community and conference to the next level.

    Every CML Advocates Network member organisation can nominate only one candidate from their region. A list of CML Advocates Member organisations can be found here: http://www.cmladvocates.net/members

    Please look at the nomination form for further information.

     

    Elections

    The elections will be held at CML Horizons in San José on Saturday 2nd May during the regional sessions. All nomination files will be provided to all members during the regional sessions, to give everyone sufficient time to consider their vote. In addition, every candidate will present themselves in the first of the two regional sessions planned for 2020.

    Every member organisation from Asia & Pacific and Latina America regions of the CML Advocates Network has one vote per seat at the elections. Even if there are 2 delegates from a specific organisation, they have only one vote. Email votes are not permitted. Only those organisations that participate in the conference in San José can take part in the voting.

    Questions?

    If you have any questions, please feel free to contact Lidija Pecova  or Giora Sharf  at any time.

    Your CML Steering Committee,

    • Giora Sharf (Israel/co-founder CML Advocates Network)
    • Jan Geissler (Germany/co-founder CML Advocates Network)
    • Jana Pelouchová (Czech Rep./co-founder CML Advocates Network)
    • Šarūnas Narbutas (Lithuania/Central and Eastern Europe & West Asia)
    • Lisa Machado (Canada/Region North America Representative)
    • Bahija Gouimi (Morocco/Region Middle East & Africa Representative.)
    • Felice Bombaci (Italy/Region Western Europe Representative)
    • José Castro, (Costa Rica/Region Latin America Representative)
    • Rod Padua (Philippines/Asia-Pacific) 

     

     

     

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    Call for Posters: CML Advocacy Poster Area at CML Horizons 2020

    What is the CML Advocacy Poster Area?

    The CML Advocacy Poster Area is a separate area inside the venue where CML Horizons 2020 participants can display a paper poster illustrating their CML patient advocacy activities, projects and outcomes.

    During CML Horizons 2020 conference, your poster will be shown and accessible by all conference participants and shared throughout our social media channels.

    The aim of the Poster Area is to provide participants with the opportunity to share their key activities and learn from the initiatives and experience of other CML organisations from around the world in CML advocacy.

    Win the Best Poster Award!

    During the conference, there will be an opportunity to vote (once only per organization) for the best poster and we will announce the winners on Sunday, 3rd May. 

    So, we invite you to bring your poster to the conference please note that we will not be able to print the poster on spot, so bring your printed posters with you, please.

    This is an amazing opportunity to showcase your Organisations’ yearly activity or a special project that made an impact on the CML Community in your country on a worldwide platform and share your activities.

    How can I submit a poster?

    Participants who would like to display a poster in the CML Advocacy Poster Area are invited to create a poster using the template and recommendations below. Participants can use this poster template or can have their own design.

    Be creative!

    You can be as creative as you like or you can use our poster guideline and template, we have made for you. You can download this template HERE.

     

     

     

     

     

     

     

     

     

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    CML Horizons 2020 Conference fee for regular 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 4 – 5 nights of accommodation,
    • local transportation from Juan Santamaría International airport to the conference and back.
    • food and drinks (breakfast, lunch and dinner), during the conference.
    • Free wifi internet in conference rooms, and in bedrooms too.
    • the general costs of the conference.

    Participants are expected to cover their own travel to Juan Santamaría International airport (e.g. flights). The conference fee does not cover incidental costs like bar, mini-bar, 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 no 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 and the name of the organization who will pay the conference fee.

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

    Sponsor delegates participation

    Sponsors' delegates are also expected to register at the registration website. Room bookings will then be made by our logistics agency. Pharma representatives are expected to book their own flights and settle their room charge at the hotel. We will organise their individual local transport to the conference venue if they 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.

    If you have any Questions?

    Please contact Lidija Pecova  or Giora Sharf  should you need any assistance. 

     

     

     

     

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    Preliminary Programme of CML Horizons 2020

    Friday 1st to Sunday 3rd May 2020

    PreliminaryProgram

    Faculty - Dr. Hochhaus, Dr. Cortez, Dr. Lipton, also Dr. Benneh.

     

    Overall contact and programme coordination

    Please contact Lidija Pecova , Lisa Machado or Giora Sharf  should you need any clarification about the conference programme.

     

     

     

     

     

     

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    Registration is now open - Join us for the 18th “CML Horizons: Learn. Share. Grow" Conference

    DATE: 1st to 3rd MAY 2020 - LOCATION: San José, Costa Rica

     

    CostaRica low

    For the first time, the 18th CML Horizons will be held outside of Europe and will take us to Central America in beautiful Costa Rica. 

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    Application for Scholarship / Conference Grant

    We encourage everyone to seek sponsors in during 2019 and early 2020 to cover the travel and conference costs. However, we acknowledge that not everybody is able to find an organisation or sponsor to participate in CML Horizons 2020.

    Therefore, a limited number of 40 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 scholarships are invited from interested advocates. Those that are granted will receive an economy class return ticket to San José and will not need to pay the conference fee.

    Eligibility criteria

    To be eligible for a 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 an application with the Attached Application form by 15th March 2020. Please email your application to Vanja at email: 

     

    The CML Horizons Steering Committee members will review and prioritize all applications received. Applicants will be informed whether they will receive a grant and whether it is a full or partial grant, as soon as possible. According to our policy, there is a maximum of 1 scholarship per patients’ organization.

     

     

     

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    Arrival and departure dates and times

    Arrival date: Thursday 30th April 2020

    • The official opening session will be on Friday 1st May at 08:00, be on time for this session. 
    • Traveling from the airport to the hotel will take you at least 20 minutes, depending on traffic. A shuttle service from the Airport to the hotel will be arranged (see below for details).

    Departure date: Monday 4th May 2020

    This year because of the distance we are organising a full day tour on Monday 4th May 2020 if you plan to participate your flights should not depart before 21.00 or Tuesday 5th May. You must click “yes” in the registration form if you wish to be part of the tour.

    Visa

    Please make sure that you have valid travel documents, please visit our page that explains Visas in detail.

     Travel of patient advocates

    Regular advocates and Pharma sponsors are expected to book and cover their own travel to Juan Santamaría International airport  (e.g. flights).

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

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

    After registration, please provide Vanja Muratovic from our logistics agency "Balkan-Adriatic " at email  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.

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

    We will book flights for Steering Committee members, those receiving a travel grant from us, and speakers. Please do not book your own travel in these cases. Please indicate your preferences for departure day and time, which airport, an airline, etc. in the respective fields of the registration form. 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 as our non-profit organization has a very limited budget. Please do this as soon as possible - and it is important we get the best available rates as soon as possible - they increase every day closer to the conference.

    Here are the contact details for All Tours travel agency:

    Email:  
    Phone Office: +972 4867 0670 .
    For emergencies: Avigail's mobile number +972 504 265 880 or Nimrod's Mobile: +972 504 265 878

    For any of your travel queries please copy Giora Sharf at 

    Travel of sponsors representatives 

    Please make note 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 and back.

    Questions?

    Please contact Lidija Pecova  Tel: +389 7838 8235 or Giora Sharf  should you need assistance or see challenges in attending CML Horizons.

     

     

     

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