advocacy

  • 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 (125 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

    CML Advocates Network-logo-rectangle

    Hosted by the Leukemia Patient Advocates Foundation, the global "CML Advocates Network" (https://cmladvocates.net) connects 125 patient organisations in 93 countries on all continents. The CML Advocates Network is a worldwide network designed and run by CML patients and carers who are registered patient group advocates and organisers.

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

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

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

     

    MPN Advocates Network

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

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

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

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

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

    For more information, please visit the MPN Advocates Network website

    CLL Advocates Network

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

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

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

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

    Acute Leukemia Advocates Network  (ALAN)

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

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

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

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

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

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

    Board of the Leukemia Patient Advocates Foundation

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

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

    Registered Address & Contact Details

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

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

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

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

     

     

     

  • About the Network

    cmladvocates widelogo print

     

    The CML Advocates Network Story

    The CML Advocates Network is an active network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 125 patient organisations in 93 countries on all continents. It was set-up and is run by CML patients and carers. Its aim is to facilitate and support best practice sharing among patient advocates across the world.

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

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

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

    Our Objectives

    The four main objectives of the CML Advocates Network are:

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

    Our Team

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

    - The CML Steering Committee -

     

    Sarunas Narbutas

     
    SARUNAS NARBUTAS

    Chairman of the CML Advocates Network. 

    President of Lithuanian Cancer Patient Coalition (POLA).

    Region Central and Eastern Europe & West Asia Representati

     

      

    jana low 

     

    JANA PELOUCHOVÁ

    Co-founder of the CML Advocates Network.

    President of Diagnoza Leukemie, Czech Republic.

     

     

     

    Giora web

     

     

    GIORA SHARF

    Co-founder of the CML Advocates Network.

    Director of Flute of Light, Israel.

     

     

     

    JAN Low

     

     

    JAN GEISSLER

    Co-founder of the CML Advocates Network.

    Chair of LeukaNET, Germany

     

     

     

     

     

     felice1 

     

    FELICE BOMBACI

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

    Region Western Europe Representative

     

     

     

    lisa2 

     

    LISA MACHADO

    Treasurer of the CML Advocates Network

    Canadian CML Network Executive Director, Canada.

    Region North America Representative.

     

     

     

     

    Bahija Low

     

     

     

    BAHIJA GOUIMI

    President of the Association AMAL, Morocco.

    Region Middle East & Africa Representative.

     

     

     

     

    jose3 

     

    JOSÉ CASTRO

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

    Region Latin America Representative.

     

     

     

    ROD Low 

     

    ROD PADUA

    President of Touched By Max, Philippines.

    Region Asia-Pacific Representative.

     

     

     

     

     

     - The team -

    Denis webpage 1

     

     

    DENIS COSTELLO

    Executive Director of the CML Advocates Network

     

     

     

     

    Celia

     

     

    CELIA MARÍN

    Programme Manager of the CML Advocates Network

     

     

     

     

    lidija 3

     

     

    LIDIJA PECOVA

    Programme Manager of the CML Advocates Network

     

     

     

    Our Audience

    Visitors of the website are

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

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

    Features for members

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

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

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

    The following functionality is available to registered members:

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

    Legal disclaimer

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

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

    How to contact us

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

    You can get in touch with us at

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

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

    lpaf-logo_200x_trans

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

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

    Technology

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

     

  • 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

     

  • Apply for an EHA 2019 Fellowship until 9th April

    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.

  • ASH 2017 in Atlanta, USA: CML patient advocates information

    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!

  • CML Advocates Network at Eurordis Federations Council 2017

    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.

  • CML Advocates Network participating at EHA-SWG 2018 Meeting

    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.

  • 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.

  • Ferdinand Mwangura Memorial

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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 -

  • Free EHA congress registrations for CML patient organisations representatives: Deadline 27 February 2018!

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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.

  • News on TFR

    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.

     

    Final 3-year Results of the Dasatinib Discontinuation Trial in Patients With Chronic Myeloid Leukemia Who Received Dasatinib as a Second-line Treatment

    Okada, Masaya et al. Clinical Lymphoma, Myeloma and Leukemia , Volume 18 , Issue 5 , 353 - 360.e1 DOI:  https://doi.org/10.1016/j.clml.2018.03.004

    Abstract


    TFR study june articleSecond-generation tyrosine kinase inhibitors (TKIs), including dasatinib and nilotinib, are better at inhibiting BCR-ABL kinase activity than the first-generation TKI imatinib mesylate. Second-generation TKIs were introduced initially as a second-line treatment for the patients with disease resistant or who were intolerant to imatinib and resulted in a remarkable response rate.1 Because subsequent studies demonstrated that second-generation TKIs show superior efficacy to imatinib for newly diagnosed chronic myeloid leukemia (CML),2, 3 their use as a first-line treatment has increased.

    Although accumulating evidence has shown that discontinuing imatinib is feasible, trials of patients receiving second-generation TKIs are lacking. Therefore, we conducted a phase II trial to investigate whether long-term TFR was achievable after discontinuing second- or subsequent-line dasatinib treatment after imatinib resistance or intolerance (the DADI trial [dasatinib discontinuation]).

    We have confirmed the feasibility of dasatinib discontinuation in patients without imatinib-resistant disease who maintain MR4.0 for ≥ 1 year. Moreover, we have demonstrated that both the characteristics of leukemia cells (an intrinsic factor) and the host immunologic responses (an extrinsic factor) are involved in maintenance of TFR. These findings could be useful for identifying patients who will derive the greatest benefit                                                           from TKI discontinuation and enable optimization of the algorithm used for treatment of CML patients taking TKIs.

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

     

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    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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  • 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

     

  • Sincere condolences to Kazakhstan CML community

     

     

    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 

     
     
     
     
     
     

  • TFR results and resources

    LEUKEMIA PUBLICATION

    tfr 1Our paper  

    “Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs”has been published in the scientific journal Leukemia.

    Our TFR for CML patients’ study shows patient-based evidence on unmet needs of CML patients during the treatment-free remission journey.

     

    Open Access Article in Leukemia: https://www.nature.com/articles/s41375-020-0867-0

     

    EHA 2020 ABSTRACT AND POSTER

    Our Abstract “CML Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey” has been accepted at the 25th Congress of the European Hematology Association starting June 11.

    EHA 2020 Abstract high 

     

    Due to the COVID-19 outbreak, this year #EHA2020 has become a virtual event as have many other congresses, and the EHA Virtual Congress Platform will be accessible until October 15, 2020.

    More details about our TFR for CML patients' Abstract and Poster presentation and the EHA Congress to come, stay tuned!

     

    ECRD online 1ECRD 2020 ABSTRACT and POSTER

     

    We are happy to announce that the European Conference on Rare Diseases and Orphan Products 2020 has selected our abstract and poster "CML Patients’ Views on Psychological Support Throughout the Treatment-Free Remission Journey" to be presented at the conference that will take place online 14-15 May 2020.

    TFR Poster ECRD 2020

     

    The ECRD, organised by Eurodis and Orphanet, is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

     

    ASH 2019 ABSTRACT

    We are proud to announce that the 61st American Society of Hematology Congress 2019 has selected our abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey" published online in the November supplemental issue of the prestigious magazine Blood. 

    To read the full text of the Abstract "CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey", please click on the image below:

  • The CML Advocates Network participating at ESH 2017

    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.

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

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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 

     

     

     

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

    clinicaltrial 2 low.jpg.001 

    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 

     

  • Treatment free remission

  • 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:

     

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