• About Leukemia Patient Advocates Foundation

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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 (126 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" ( connects 126 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 ( 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.

    • Felice Bombaci (Italy, Western Europe region representative; Co-chairman of the CML Advocates Network)
    • Sarunas Narbutas (Lithuania, Central and Eastern Europe & West Asia region representative; Co-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)
    • 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 Head of Communications and Programme Manager Celia Marín and the Programme Manager Lidija Pecova


    MPN Advocates Network

    mpn-advocates-logoHosted by the Leukemia Patient Advocates Foundation, the global "MPN Advocates Network" ( 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


    Hosted by the Leukemia Patient Advocates Foundation, the establishment of the CLLAdvocates Network (CLLAN) ( 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)  (

    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
    Registration: Chamber of Commerce of Canton Bern, Switzerland – CH-

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

    LeukaNET e.V.
    Am Rothenanger 1b
    85521 Riemerling




  • Algeria: Philadelphia LMC


    Mailing/Postal Address:

    Cite1600 logements bloc135 appartement 5 khroub

    025200 Constantine



    Tef: 002132699100

    Fax: 0021337860227




    Mr Khaldoun Wahid, Vice President


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


    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



  • CML Clinical Trials Registry now lists 35 ongoing studies

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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 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.

  • Palestine: CML Palestine


    Mailing/Postal Address:

    Al Adel Street, Awqaf building , First Floor, Palestine


    Tel.: 00972599205019




    Jamal Hurani, founder of CML palestine and current chairman


    CMl palestine was established for the purpose of serving the CML patients and to raise the knowledge about CML within the community.

    The organization was registered recently and in the process of preparing initiatives


    The main objetives are:
    Providing help and advice for CML patients
    Distributing knowledge about CML
    Help in regards to drugs and lab tests provisions for patients
    Coordination with CML societies localy and internationaly
    Lobbying for the improvement of legislative environment regarding CML treatments

    Number of members or patients organisation represents today



  • Senegal: A.G.I.L.


    Mailing/Postal Address:

    30 Avenue, Pasteur Dakar Senegal

    Tel.: 775201141




    Mr Abdoulayd Fofana


    This organization has for aim to help patients living with CML and GIST take help each other mentally  and psychologically.


    Support each other mentally and psychologically.
    Lobbying to have assistance from the government for the monitoring of the disease.
    Have access to the best care for this disease.
    Inform the population about this disease.
    Decrease the stjgmatization of the disease.

    Number of members or patients organisation represents today



  • Spain: Pacientes LMC


    08172 Sant Cugat del Vallès,

    Barcelona, Catalunya



    Toni Montserrat, Promoter and Coordinator.
    María José García, Promoter and first CML'er.
    Sandra Otero, Promoter.
    Cristina Carmona, Promoter.


    Interest group created as an on-line support platform for patients of CML and relatives, using other groups as a model with the aim to participate with the CML community.


    Defend the interests of patients with chronic myeloid leukemia (CML), both in front of the Administration and before the medical, pharmaceutical and other groups that may affect the objective itself.

    Support CML patients at all levels.

    Participate in initiatives for public recognition and awareness of the needs of CML patients.

    Working with the aim to become a member of FECEC and participate in the definition of the Quality of Life policies of Cancer chronic patients.

    Defend the rights of patients due to side effects of the disease itself or the medication in front of the Medical Courts, or by an adequate pharmaceutical prescription and not conditioned by economic issues.

    Collaborate with the Health Administrations in the elaboration of policies of social and medical support.

    Participate internationally in advocates entities of CML patients, being a stakeholder as an interest group and NGO.

    Code of conduct:

    Always be guided by objective criteria marked by CML patients and never by industry or other people's estates.

    To seek positive and useful results for the CML patient community, without seeking profit in any case.

    Registered in Registre de grups d’interès de l’Administració de la Generalitat i del seu sector públic (Generalitat de Catalunya Departament de Justícia Direcció General de Dret i d'Entitats Jurídiques) with ID 1278 on January 10th 2017.



  • The CML Clinical Trials data-base now lists 51 studies worldwide

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    The CML Advocates Network inofficial registry on clinical trials currently lists 51 studies:  


    • 28 CML studies currently recruiting patients
    • 1 non-CML study also in the recruiting phase
    • 22 studies that are no longer recruiting.



    Check here CML Trials Registry 




  • The CML Clinical Trials data-base now lists 54 studies worldwide

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    Our clinical trials registry currently lists 54 studies:

    • 32 CML studies actively recruiting patients, including
    • 2 paediatric trials
    • 7 treatment-free remission trials
    • 20 studies that are no longer recruiting


    Check here CML Trials Registry 


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