advocates

  • About Leukemia Patient Advocates Foundation

    lpaf-logo 600x trans

    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 (116 patient organisations in 86 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 world wide
    • 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

    CML Advocates Network-logo-rectangle

    Hosted by the Leukemia Patient Advocates Foundation, the global "CML Advocates Network" (http://cmladvocates.net) connects 115 patient organisations in 86 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 (http://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 2017, 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: 

    • 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)
    • Ferdinand Mwangura (Kenya, region: Middle East & Africa)
    • Gail Sperling (USA, region: North America)
    • Zack Pemberton-Whiteley (UK, region: Western Europe)
    • Mercedes Arteaga (Argentina, region: Latin America)
    • Rod Padua (Philippines, region: Asia-Pacific)
    • Sarunas Narbutas (Lithuania, region: Central and Eastern Europe & West Asia)

    MPN Advocates Network

    mpn-advocates-logoHosted by the Leukemia Patient Advocates Foundation, the global "MPN Advocates Network" (http://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 world-wide 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:

    • Jonathan Mathias, Chair (UK)
    • Cheryl Petruk (Canada)
    • Felice Bombaci (Italy)
    • Giora Sharf (Israel)
    • Ilse Jans (Belgium)
    • Peter Loffeelhardt (Spain)
    • Robi Zelig (Israel)            
    • Werner Zinkand (Germany)
    • William Crowley (U.S.A)

    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

    cllan-logo-500px

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

    • Lorna Warwick, Chair (Canada)
    • Nick York (UK)
    • Pierre Aumont (France)
    • Felice Bombaci (Italy)
    • Brian Koffman (USA)
    • Jana Pelouchova (Czech Republic)
    • Michael Rynne (Ireland)
    • Sofia Sá Cardoso (Portugal)

    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)  (http://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)
    • Sofia Sa Cardoso,Treasurer (Portugal)
    • Anita Waldmann (Germany)
    • Sophie Wintrich (UK)
    • Diego Villalón (Spain)
    • 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)

    Management Team of the Leukemia Patient Advocates Foundation

    • Lidija Pecova - Programme Manager ()
    • Celia Marín - Programme Manager ()

    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:

     

     

     

  • Algeria: Philadelphia LMC

    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

     

  • ASH 2016 update on stopping CML treatment with TKIs in deep molecular response

    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.

  • ASH 2016: Interviews about hot topics in chronic myeloid leukemia

    ash

     

    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.

  • Calling CML Patient Advocate Leaders to apply for the 3rd EUPATI Patient Expert Training Course

    15493828 10210998051774712 1390580387857235130 o

    eupati logo trans po

    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.

  • CML Clinical Trials Registry now lists 35 ongoing studies

    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.

  • CML Horizons 2017 - Save the date: 26-28 May 2017

    thumb save date image

    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 Horizons 2017 Registration Now Open - 26-28 May 2017

    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!

     


     

  • EuroBloodNet European Reference Network starts with the hematology European Patient Advocacy Group (ePAG) - and CML Advocates Network is in!

    16195573 10211424380112654 8335182591519517615 n24 European Reference Networks, based on an initiative of the European Commission and EU Member States, are networks of healthcare professionals, centres of expertise and patient organisations aimed at improving quality, safety, and access to highly specialised healthcare in Europe.

    The EuroBloodNet European Reference Network,  covering rare haematological diseases,  has kicked off on 27 January 2017 in Paris with 66 partner organisations from 15 countries. The Leukemia Patient Advocates Foundation, CML Advocates Network and CLLAdvocates Network are deeply involved in EuroBloodNet to make sure it delivers to patients' needs.

  • IMI Project "HARMONY - Big Data for Better Health Outcomes" launched, CML Advocates Network involved in coordinating patient community input

    EHA Logo HARMONY Programme def MAY2016

    The Innovative Medicines Initiative (IMI) has approved HARMONY, a 5-year project that aims to foster better access and care for patients with various hematologic malignancies (HM) with the use of big data. The project is made up of 51 partners from 11 European countries, including 7 pharmaceutical companies.

    We are very excited that CML Advocates Network will be contributing to this unique project. Jan Geissler is the Work Package leader that will be coordinating HARMONY's Stakeholder Forum and patient input of the haematology patient community into this project. The project will kick-off on 16 January 2017 in Salamanca, Spain.

  • Palestine: CML Palestine

    CONTACT INFORMATION:

    Mailing/Postal Address:

    Al Adel Street, Awqaf building , First Floor, Palestine

     

    Tel.: 00972599205019
    Fax:

    E-Mail:

    Web: www.cmlpalestine.org

    KEY CONTACT:

    Jamal Hurani, founder of CML palestine and current chairman

    BRIEF DESCRIPTION OF ORGANIZATION:

    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

    KEY OBJECTIVES AND KEY INITIATIVES OF ORGANISATION

    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

    7

     

  • Senegal: A.G.I.L.

    CONTACT INFORMATION:

    Mailing/Postal Address:
     

    30 Avenue, Pasteur Dakar Senegal

    Tel.: 775201141

    E-Mail:
    Web: www.agil.comli.com

     

    KEY CONTACT:

    Mr Abdoulayd Fofana

    BRIEF DESCRIPTION OF ORGANIZATION:

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

    KEY OBJECTIVES AND KEY INITIATIVES OF ORGANISATION

    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

    50

     

  • Treatment-free remission in chronic myeloid leukemia

    nccnguide

    Stopping Treatment in CML has now become a standard care with the publication of the NCCN and ESMO guidelines which include stopping treatment outside the context of clinical trials. The ELN recommendations are expected in few months and will relate to this hot topic as well.

    At the same time, there are many questions patients have about the process.

    In the following video Giora Sharf, the co-founder of CML Advocates Network and a CML patient on TFR for 3.5 years, interviews one of the world CML experts Prof. Giuseppe Saglio from University of Turin Italy, trying to answer some of the concerns CML patients have when thinking about stopping treatment. For example:

     

    What is treatment-free remission concept?

    What is the longer period of time that a patient has been on TFR?

    Who are the patients eligible for TFR?

    How many patients have to restart the treatment after TFR and when?

    How can the psychological aspects on TFR be overcome?

    What is the standard of monitoring a patient on TFR?

    To watch to video click here:

     

  • Welcome, Philadelphia LMC, Algeria! Now 115 patient organisations from 86 countries in the CML Advocates Network

    We are proud to welcome a new member organisation to the CML Advocates Network: Philadelphia LMC based in Algeria. The CML Advocates Network now totals at 115 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

     

     

  • Welcome, Power of CML, Egypt! Now 116 patient organisations from 86 countries in the CML Advocates Network

    We are proud to welcome a new member organisation to the CML Advocates Network: Power of CML based in Egypt. The CML Advocates Network now totals at 116 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

     

     

  • World CML Day 2017 Photo Gallery

     

    wcmldlogo

     

     

    On 22 September 2017, the worldwide CML community again celebrates World CML Day under the motto

    "Today, Together". Today, together we are treated. Tomorrow we need cure!

     

    On this page we are publishing photos of World CML Day 2017 events submitted by members of the CML Advocates Network across all continents.

     

     

     

     

                                          THIS IS WORLD CML DAY 2017 PHOTO GALLERY

     

    World CML Day 2017
    Don´t forget to submit photos of YOUR event!

    For this, please send an e-mail to Celia Marín at  If the pictures you are sending exceed the maximum quota allowed, we suggest to use www.wetransfer.com

    Thank you in advance for sharing your photos!

    Enjoy #TodayTogether #WCMLDay17!