leukemia

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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 (122 patient organisations in 92 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 122 patient organisations in 92 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:

     

     

     

  • 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

     

  • EHA 19The European Hematology Association (EHA) has already opened the Fellowship Application and Registration process by providing 60 free congress registrations for leaders of hematology patient organisations. This year, EHA has increased their fellowship and is offering an additional 10 fellowships, to provide patient advocates the opportunity to attend the 24th annual EHA congress which is taking place in Amsterdam from June 13-16, 2019.

     

    If you are a representative of a CML patient organisation interested in attending this Congress, you have the possibility to apply for an EHA Fellowship and attend the 24th EHA Congress HERE.

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    The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting is taking place June 2–6 in Chicago.

    At the CML Education Session, CML expert Dr. Ehab Atallah, MD, associate professor of medicine in the division of hematology and oncology at the Medical College of Wisconsin, has been speaking during an Education Session about discontinuation of tyrosine kinase inhibitors in chronic myeloid leukemia (CML) presenting about the "Promise of stopping TKIs: Is it ready for prime time"?

    Even though no new data was presented (see ASH 2016 Report), it has been very interesting to listen to the US perspective.

     

     

     

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    The 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago.

    At ASCO, Lia Gore, MD, co-director of the Hematological Malignancies Program at the University of Colorado Cancer Center and pediatric oncologist at Children’s Hospital Colorado, presented exciting data about Dasatinib in pediatric CML patients: CML in children is ultra-rare, making it very difficult to study - CML cases make up only 3% of all leukemias in children.

    The data presented here has been submitted to FDA and EMA for the approval in pediatric use, and is quite impressive: The side effect profile seems to be very favourable and the inhibition of bone growth in children on TKIs seems to be less of an issue in Dasatinib than in Imatinib

    However, given that administration of medicines in children and being adherent to therapy is often a challenge for young CML patients (and their parents), the availability of Dasatinib also as a powder-based suspension as well as the fact that the drug can be taken without or with food may make life much easier.

    The investigators concluded that Dasatinib may be considered as a new standard of care for pediatric CML patients. 

  • ASCO17 tki discontinuation posterThe 2017 American Society of Clinical Oncology (ASCO) Annual Meeting were taking place June 2–6 in Chicago and our cofounder Jan Geissler has collected all the highlights of this important meeting for chronic myeloid leukemia community.

    In the recent past, not only hematologists but also patient groups have expressed their concern that "stopping CML therapy out in the field" may lead to bad practice by doctors not following expert recommendations, and have suggested stopping TKI therapy should only be done in clinical trials.

    Of course, especially after NCCN has updated its CML guideline and has given guidance on stopping treatment despite the prematurity of data, we could expect that this would be largely ignored out in the field.

    So here is Jan Geissler's shock poster at #ASCO17: The high arts of CML therapy and the sad reality - we need to be grateful for investigators spelling it out so clearly. He is shocked, as his gut feeling about bad practice is now supported by data.

  • 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.

  • ashlogoJust two weeks left until the 59th ASH Annual Meeting and Exposition opens its doors on 9th December in Atlanta, USA. We are hoping to see many CML Advocates at #ASH17!

    This is the world’s most comprehensive haematology event of the year and it is very important to be ready before the meeting as CML advocates in order not to miss out on any important session about chronic myeloid leukaemia.

    We are happy to share with you some key information about CML sessions hoping it will assist you to prepare and outline your days and make the most out of your time whilst at #ASH17.

    Click on "Read more" and check what is offered for patient advocates, haematologists and other stakeholders interested in CML at American Society of Hematology Annual Meeting this year. If you are coming to #ASH17, don't miss any of them, they will all be really interesting!

  • ashlogoThe 60th American Society of Haematology Annual Meeting and Exposition is taking place from 1-4 December in San Diego, USA.

    The meeting is providing a huge educational experience and the opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in haematology with the attendance of more than 25,000 health-care professionals as well as many patient advocates.

    We are pleased to share with you our first "ASH 2018 Report", contributed by our co-founder Jan Geissler.

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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.

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    Our Programme Manager Celia Marín on behalf of the Leukemia Patient Advocates Foundation participated at the “Council of European Rare Disease Federations” held in Paris on 26-27 October 2017 by the Rare Diseases Europe EURORDIS with 26 other patient organisation representatives from different communities such as Myeloma Patients Europe and Lymphoma Coalition.The two-day meeting was full of very informative and interesting sessions, starting with a joint meeting with the Council of National Alliances.

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    horizons17

     

    Chronic Myeloid Leukemia is a Rare Disease

    What is a Rare Disease? 

    The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition. In Europe and many other regions, a disease is defined as rare when it affects fewer than 1 in 2000. One rare disease may affect only a handful of patients in the European Union and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

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    Chronic Myeloid Leukemia is a Rare Disease

    What a Rare Disease is? 

    Rare_Disease_Day_2019_PosterAccording to the European Commission, any disease affecting fewer than 5 people in 10,000 in the EU is considered rare. Although this might appear small, it translates into approximately 246,000 people.

    Most patients suffer from even rarer diseases affecting 1 person in 100,000 or more. Approximately 5,000-8,000 distinct rare diseases affect 6-8% of the EU population i.e. between 27 and 36 million people.

    In the USA, a disease is defined as rare when it affects fewer than 200,000 Americans at any given time. 

    The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition

    • 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
    • 50% of rare diseases affect children.

    Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

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    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

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    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.

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    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!

     


     

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    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

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    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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  • Emerging news regarding CML Horizons 2019    CML Logotype Nairobi 2019 2

    Dear members and friends of the CML Advocates Network,

    You are probably aware of the terrible attack that took place yesterday by terrorists in the Dusit hotel in Nairobi. 

    These are terrible and sad news indeed. Our thoughts are with the lost innocent victims and their families. We live in a crazy world with crazy people. Terror is taking lives in almost every country and it is so difficult to understand and accept. We must not react rashly, and will not make a decision based on emotion, but rather consider the alternatives and then make a decision.

    The steering committee will now study the facts and the extent of the sad event and will discuss the implications of CML Horizons in Nairobi in May.

    Meanwhile, we are not stopping registration as we already have more than 20 delegates registered, but we are stopping any activity that increases our costs and commitment like we will not book more flights until the Steering committee discusses the issue and makes a decision.

    We are in constant touch with our local member organization, Henzo Kenya, and with our logistics agency Safari Trails to better understand the Situation in Nairobi and all safety steps taken now and in the near future.

    We are evaluating the situation and we will come back to our members with more information and the final decision as soon as possible within 2 weeks.

    We must decide what is best for Horizons and for all our members and delegates. We will put the safety of our participants at the top of our priority.

    It is a sad day.

    With our hopes for a better future
    Giora and all the CML Advocates Network steering committee members.

     

     

     

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