advocacy

  • 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 (118 patient organisations in 88 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 118 patient organisations in 88 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:

     

     

     

  • 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

     

  • 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!

  • eurordis4

    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.

  • EHA logoThe European Hematology Association held the “EHA-SWG Scientific Meeting on Integrated Diagnosis Strategies in Oncohematology for the Management of Cytopenias and Leukocytosis” on February 8-10, 2018 In Barcelona, Spain.

    The scientific meeting covered all practical aspects of diagnosis of haematological disorders suspected when encountering leukocytosis or cytopenia, with a strong focus on morphology, pathology and flow cytometry.

    toni1During three days, the hematological experts put under the spotlight very interesting topics as the following: Pre analytical and analytical considerations; Towards integrated diagnoses: basics of morphology, flow cytometry, cytogenetics and molecular karyotype, molecular technologies; Morphology of granulo-monocytopoiesis: normal, MDS, AML and MPN; Lymphopoiesis, leukemia and lymphoproliferative disorders; New drugs / therapeutic approaches and personalized medicine or Patient’s follow up: MRD and detection of the emergence of resistances.

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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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    We pay tribute to our beloved friend and Steering Committee member

     

    Ferdinand Mwanguraenjoying the rain

     

    We are profoundly saddened at the passing of Ferdinand Mwangura, our friend and Steering Committee member. Ferdinand passed away in Kenya on 28th February 2018 at the age of 40.

    Ferdinand was a young advocate and was well-loved and admired for his enduring commitment to work within CML Life Africa, a network of CML patient groups in Africa, Ferdinand was regarded as a leader, a mentor and a big brother to many.

    In May of 2017, Ferdinand was voted in by his fellow patient advocates as the new steering committee member for CML Horizons representing Africa & Middle East region. He took this role on proudly and was a highly engaged member, always ready to provide advice and perspective on any issue.

    He made particularly valuable contributions to the programme for 2018 CML Horizons. He also helped pioneer the network’s first global CML Community Advisory Boards, where he championed the voice and needs of CML patients from Africa. 

    - Ferdinand enjoying the rain in the Kenyan South Coast -

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    ehacongress1

     

    Again this year, the European Hematology Association (EHA) is providing around 50 free congress registrations for leaders of hematology patient organisations, to give patient advocates the opportunity to attend the 23rd annual EHA congress which is taking place in Stockholm from June 14-17, 2018.

  • In this section, we are collecting and publishing news focused on treatment-free remission in CML on a regular basis. We offer you to check the "News on TFR" section to be informed about latest advances in stopping treatment for CML patients.

     

     

    Considerations for Successful Treatment-free Remission in Chronic Myeloid Leukemia

    Considerations for Successful Treatment-free Remission in Chronic Myeloid Leukemia. Goldberg, Stuart L. et al. Clinical Lymphoma, Myeloma and Leukemia , Volume 18 , Issue 2 , 98 – 105. DOI: https://doi.org/10.1016/j.clml.2017.11.006

    TFR DOI 1Abstract

    BCR-ABL1 tyrosine kinase inhibitors have dramatically improved outcomes for patients with chronic myeloid leukemia, and current studies are investigating whether some patients may be able to suspend therapy yet maintain response in a state known as “treatment-free remission” (TFR). Results from ongoing studies suggest that ≈ 40% to 60% of patients in sustained (generally ≥ 2 years) deep molecular response (defined as a 4-log or deeper reduction in BCR-ABL1 transcripts, depending on the study) who attempt TFR may successfully remain off treatment. Results from TFR clinical trials, patient considerations for attempting TFR, and potential predictive factors associated with successful TFR are reviewed herein.

    To read the full article please visit the Clinical Lymphoma, Myeloma, Leukemia Journal

     

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    fdalogoFDA updates the label of Tasigna to reflect that certain patients with a type of leukaemia that may be eligible to stop treatment after sustained response

    Discontinuation in treatment marks a first in Chronic Myeloid Leukemia

    FDA News Release. December 22, 2017.

    The U.S. Food and Drug Administration has updated the product label for the cancer drug Tasigna (nilotinib) to include information for providers about how to discontinue the drug in certain patients. Tasigna, first approved by the FDA in 2007, is indicated for the treatment of patients with Philadelphia chromosome-positive (Ph+) chronic myeloid leukaemia (CML). With today’s updated dosing recommendations, patients with early (chronic) phase CML who have been taking Tasigna for three years or more, and whose leukaemia has responded to treatment according to specific criteria as detected by a test that has received FDA marketing authorization, may be eligible to stop taking Tasigna.

    “Patients diagnosed with CML generally face a lifetime of treatment to keep their leukaemia from growing or recurring,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “This approval shows that some patients may be able to stop treatment with Tasigna altogether if they are showing a strong response to therapy. While we welcome this progress in patient care, it’s important to note that any discontinuation of treatment still means patients must be regularly monitored for disease recurrence.”

    To read more, please visit the U.S. Food and Drug Administration website

     

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  • 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

     

  • 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

     

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    Our hearts go out to Kazakhstan and members of the Association of Patients with Hemoblastoses and especially to the family of Lyubov Mizinova who has passed away this month.

    We have lost a dear friend and valued patient advocate.

    Lyubov Mizinova was the President of the long-running organisation in Kazakhstan and our member for many years.

    She was a commendable CML advocate who was active in both Kazakhstan and part of the CML Advocates Network many years.

    We all are very proud of every single CML patient advocate who dedicates time, resources, skills and love to the CML community worldwide.

    We will all miss Lyubov very much and her loss will be felt by the CML community.

    Our thoughts and prayers are with Mrs Mizinova's family at this time.

    picture Ljubov MizinovaMizinova2 

     
     
     
     
     
     
  • esh footerThe 19th Annual John Goodman Conference on Chronic Myeloid Leukemia: Biology and Therapy were held in Estoril, Portugal on12-15 October 2017 organized by the European School of Haematology (ESH).

    This event gathers leading scientists in the field of Chronic Myeloid Leukemia treatment including Clinicians as well as Biologists and Medical laboratory technologists.

    Although the Programme does not contain specific Patient Advocacy sessions like in other scientific congresses, several patient advocates from different countries have been attending the conference. A number of CML advocates have been participating at this conference and sharing our CML patient's perspective.

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    screenshot ctrials

    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 

     

     

     

  • 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:

     

  • 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.

     

     


  • wcmldlogo

     

    This World CML Day 2017 has been a really exciting celebration for Chronic Myeloid Leukemia community. 60 CML Advocates Network patient organisations members of 51 countries from all continents joined our global campaign "Today Together: Today, together we are treated.Tomorrow we need cure!", raising awareness about CML patient perspective, needs, feelings and wishes.

    CML patient advocates and patient associations empowered not just the CML patients, relatives and carers but also health care providers, media, policymakers and the public in general.

    The CML Advocates Network was really positively touched by hundreds of CML advocacy activities where emotions and scientific CML information shared by CML advocates led the CML conversation on media, social media, health centres and many streets and institutions.

    We want to present you this World CML Day 2017 Report with most of the global activities as well as express our warmest gratitude to all participants who made last 22nd September a memorable day.

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    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!

     

     

     

     

     

     

     

     

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