advocates

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    The Leukemia Patient Advocates Foundation is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives & survival of patients affected by Leukemia. It is a platform for discussions & best practice sharing to Leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, policy, treatment and care. It also acts as a platform for patient organisations – concentrating on educating, connecting and supporting patient group leaders.

    The foundation acts as a legal platform for self-sustained patient advocacy networks: The CML Advocates Network (122 patient organisations in 92 countries), the MPN Advocates Network, the CLLAdvocates Network and the Acute Leukemia Advocates Network (ALAN).

    Vision and Mission of the Leukemia Patient Advocates Foundation

    Our vision is a world in which all leukemia patients have access to the best treatment, care and support available.

    Our mission is:

    • To improve the lives and survival rates of patients affected by leukemia, as well as their relatives, worldwide
    • To support patient leaders in providing help and support to leukemia patients and their relatives
    • To provide a platform for education and best practice sharing of leukemia patient groups 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" (https://cmladvocates.net) connects 122 patient organisations in 92 countries on all continents. The CML Advocates Network is a worldwide network designed and run by CML patients and carers who are registered patient group advocates and organisers.

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

    • Sarunas Narbutas (Lithuania, Central and Eastern Europe & West Asia region representative; Chairman of the CML Advocates Network)
    • Giora Sharf (Israel, co-founder of the CML Advocates Network)
    • Jan Geissler (Germany, co-founder of the CML Advocates Network)
    • Jana Pelouchová (Czech Republic, co-founder of the CML Advocates Network)
    • Bahija Gouimi (Morocco, Middle East & Africa region representative)
    • Lisa Machado (Canada, North America region representative)
    • 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 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 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:

    • 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:

     

     

     

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    The CML Advocates Network Story

    The CML Advocates Network is an active network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 122 patient organisations in 92 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 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 low

     

     

    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

    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 -

    Celia

     

     

    CELIA MARÍN

    Programme Manager of the Leukemia Patient Advocates Foundation

     

     

     

     

    lidija 3

     

     

    LIDIJA PECOVA

    Programme Manager of the Leukemia Patient Advocates Foundation

     

     

     

    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!

     

  • 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

     

  • 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

     

    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.

  •  

    - Written by Sharf Giora, CML Advocates Network -

    ASH 2017 is the 10th ASH conference I am attending in a raw, and I am being asked many times why do I like this conference and travel such a long distance to attend it every year.

    AshGiora1The main reason that I, as a patients representative, leave home and travel to ASH is to hear and learn about the last innovations in the treatment of blood cancers and bring these news to patients in my country and across the globe, to empower them with knowledge, and mainly hope. that research in the various diseases is ongoing and if they are in a need for a new treatment, maybe it is just around the corner. The second reason why I go to ASH, which is not less important, is that this is the best place and opportunity to meet in a short time all the stakeholders that I am working with, like Drs and scientists from Israel and the globe, Pharma representatives from medical and patients relations, and other patients advocates, and to discuss with all of them how to continue and strengthen our collaboration.

    - Giora and Nadav, a board member of
    Flute of Light at ASH 2017  -

  • 15493828 10210998051774712 1390580387857235130 o

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    THE EUPATI PATIENT EXPERT TRAINING COURSE IS TAILORED TO PATIENT ADVOCATES AND TURNS THEM INTO PATIENT EXPERTS IN MEDICINES RESEARCH AND DEVELOPMENT.

    DEADLINE FOR APPLICATIONS IS 31 MARCH 2017

     

    The EUPATI Patient Expert Training Course in Medicines Research & Development is an exciting and unique opportunity, offering patient advocates expert-level training that is specifically tailored for them. 

    This 14-month tailor-made course, based on e-learning with additional two face-to-face training weeks, gives you the tools as CML patient advocate leaders to be able to contribute to be part of the research and development process and all related regulatory processes. It helps to understand all processes of pre-clinical and clinical research, drug safety, benefit/risk assessment and health technology assessment at an expert level.

    IMG 0348So far, three CML advocates members have participated in the EUPATI course: Conny Borowczak, Aimo Stromberg and Sarunas Narbutas. Read about Conny's experience by clicking on "Read more", and contact them if you have questions.

    We encourage European patient advocates (from the wider European region as defined by WHO) to apply before the deadline of 31st March at https://www.eupati.eu/third-cycle-apply-now/

     

     Click on read more for Testimonial.

  • 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.

  • thumb save date image

    Join us for the 15th “CML 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-Logotip-Frankfurt-2017-2

     

    Register here - Preliminary Program - Conference fee -  Scholarship Application
    - Call for Abstracts - Call for Posters - Travel - Visas - Venue & Accommodation - Acknowledgements - Call for Nominations

     

    Registration is now open - Join us for the 15th “CML 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!

     


     

  • CML Logotip Warsaw 2018 2

     

    Register here - Preliminary Program - Conference fee -  Scholarship Application
    - Call for Poster Presentation Abstracts - Travel - Visas - Venue & Accommodation - Acknowledgements 

     

    Registration is now open - Join us for the 16th “CML Horizons: Learn. Share. Grow" Conference

    DATE: 4TH to 6th MAY 2018
    LOCATION: WARSAW, POLAND

    poland

    Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians. 

    This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization. 
     
     

    Register Now!

     

     {rscomments off}

     

  • CML Logotype Nairobi 2019 2

     Register here - Preliminary Program - Conference fee -  Scholarship Application

    Call for Poster - Call for Nominations Travel - Visas - Venue & Accommodation - Acknowledgements  

    Registration is now open - Join us for the 17th “CML Horizons: Learn. Share. Grow" Conference

    DATE: 17th to 19th MAY 2019
    LOCATION: Lisbon, Portugal

    00052129662 Large 2

    Due to events beyond our control and with sad regret we have changed the location of this year's Horizons. Even though location has been changed  to Lisbon, Portugal this does not take away from why we had chosen Nairobi as our original destination and that is to honour our dearly departed Ferdinand Micho who was a leader in the fight of CML in Africa and the Middle East but also for the challenges that CML patients face in low and middle-income countries in access to treatment and monitoring.

    We have secured top speakers from Western countries like Dr. Francois Mahon & Dr. Gianantonio Rosti, also African and Asian countries such as Dr. Qian Jiang from China, Dr. Abinya from Kenya and Dr. Benneh from Ghana. More speakers are expected to confirm soon.

    The CML Horizons conference is dedicated to the development of our members as patient advocates and deals with topics such as: - What is the goal of CML Treatment? Improving access, Key initiatives in CML treatment & advocacy and Living with CML and the future outlook. Dealing with these types of questions is the essence of Learn. Share & Grow and our conference offers the opportunity to support and facilitate the quality of education. This one of a kind conference also provides opportunities to be able to exchange ideas, interact & share best practice and provide a platform to start networking across borders, build alliances and so much more for you to bring back to your own organization.

    We very much hope that you will be able to attend the 17th conference of its kind - with an exciting program on CML advocacy and CML science.

    Our conference will provide you with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy and learn from the experts - both patient advocates and physicians by networking opportunities with CML advocacy leaders around the globe.

     

    CLICK HERE TO REGISTER

     

    REGISTER 1

     

     

     

     {rscomments off}

     

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

    Dear members and friends of the CML Advocates Network,

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

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

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

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

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

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

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

    It is a sad day.

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

     

     

     

  • 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.

  • 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.

  • Important Notice: Changes to the CML Horizons 2019 Conference                                               CML Logotype Nairobi 2019 2       

    Dear Members & friends of CML Advocates Network,

    This is a very important announcement and follows up from our notice a few weeks ago named "emerging news regarding CML Horizons 2019" following the tragic events that took place in Nairobi, Kenya.

    After careful consideration, discussions and investigation the CML Steering committee has decided that at this point of time it is better for the safety of our members to change the location of CML Horizons 2019 and at such short notice we will need to come back to mainland Europe. Horizons will now be held in Lisbon, Portugal at the Lisbon Marriott Hotel, Avenida dos Combatentes 45, Lisbon 1600-042 Portugal and the dates still remain the same 17-19 May 2019.

    This does not mean that in future years we will not take Horizons to another continent and we will work hard to try and make this happen for 2020 and we will keep you updated.

    What does this change of location mean for all our members? We will need you to start registration ASAP and depending on the country you come from if you need a Schengen Visa this process can take 6-9 weeks so we need you to take the following steps.

    Step 1: Register for CML Horizons 2019 here: https://www.cmladvocates.net/cmlhorizons

    Step 2: At the following link is a list of the nationalities that must process a Visa: https://www.vistos.mne.pt/en/short-stay-visas-schengen/general-information/who-needs-a-visa#countries-2

    Step 3: Once you have registered, we will be in contact with you in regards to support documents for your visa application.

    For those members who have already registered: Vanja and Lidija will be in touch with you soon and there is NO NEED to re-register. For those who need a VISA we will need to send you new documents for a Schengen Visa to Portugal and new flight itinerary.

    Finally, please note that this decision did not come easy and does not take away from why we had chosen Nairobi as our original destination and that is to honour our dearly departed Ferdinand Micho who was the leader in the fight of CML in Africa and the Middle East but also for the challenges that CML patients face in law and middle-income countries in access to treatment and monitoring.

    We look forward to seeing you all soon and please should you have any questions at all please do not hesitate to contact us.

     

    Warm Regards

    Giora and Lidija on behalf of the CML Advocates Steering Committee
    CML Advocates Network

     

  • 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

     

  •  

     

    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 

     
     
     
     
     
     

  • {rscomments off}

     

    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 

     

     

     

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