Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myelogeneous Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, running joint campaigns, and educating advocates how to build and grow patient organisations. The network is run by volunteers who are CML patients.
Today, 4 Feb, is World Cancer Day. We are excited to announce that on this occassion the European Parliament in Strasbourg is launching The European Cancer Patient's Bill of Rights.
The European Cancer Concord (ECC) under the stewardship of the Society for Translational Oncology, Cancer Patient Advocacy Organisations from throughout Europe and Members of the European Parliament against Cancer (MEPs against Cancer) have come together in partnership on World Cancer Day 2014 at the European Parliament in Strasbourg to launch a special patient-centred initiative for the citizens of Europe. The European Cancer Patient’s Bill of Rights represents a catalyst for change, a Charter that provides a framework to deliver optimal standards of cancer research and cancer care for every European citizen. The launch coincides with the publication of two peer reviewed articles on the Bill of Rights in the premier international cancer journals Lancet Oncology and The Oncologist. For more information please follow the link: https://sto-online.org/ecp-bill-of-rights
We are looking forward to our 3rd CML Horizons conference held in Belgrade, Serbia on 2-4 May 2014. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community and provides a unique opportunity for participants to share experiences and best practice. The conference will again feature a good mix of medical sessions with world-renowned CML experts like Dr Giuseppe Saglio from Italy, Dr Philipp Le Coutre from Germany, Dr. Neil Shah from the USA, Dr. Andrija Bogdanovic from Serbia, Dr. Qian Jiang from China, as well as sessions with CML advocacy topics.
Leaders of leukemia patient advocacy organisations are eligible to participate in this conference. More information can be found at http://www.cmladvocates.net/cmlhorizons2014
To improve the information available to patients, in 2001 an international workgroup of CML patient organisations and experts developed a patient-friendly summary of the European LeukemiaNet’s (ELN) 2009 CML recommendations for the management of Chronic Myeloid Leukemia. The patient-friendly summary was distributed by CML patient organizations both online and in print. It can be accessed here: http://www.cmladvocates.net/education/eln-recommendations
In 2013, the ELN published updates to the CML treatment recommendations. Now, to make sure that patients have access to the recent update, the same workgroup is planning to update the patient-friendly summary. In order to ensure we are meeting the needs of the CML community, please share your experience with the existing ELN patient-friendly summary and tell us how you’d like to see the new summary improved in 2014.
If you have used the ELN summary before, please help us and respond to our survey by 30 January 2013 here: https://www.surveymonkey.com/s/ELNPatient-FriendlySurvey
We have now launched the CML glossary, which explains terms that are commonly used in the context of CML, specifically in medical publications. You can access the glossary here: http://www.cmladvocates.net/glossary
All terms of the glossary are automatically being highlighted in articles all across the CML Advocates Network website, so when we publish e.g. our ASH reports, all terms contained in the glossary are explained by just moving your mouse on all terms marked with a fine dotted line.
We will be extending the glossary over the next couple of weeks, but as a community-run glossary, we appreciate your help! If you would like to suggest a glossary term that we've not covered so far, please suggest it here: http://www.cmladvocates.net/newglossaryterm. The glossary is released under Creative Commons License, so feel free to re-use.
Patients wishing to participate in clinical studies often look for a central source of information where they can find easy-to-understand facts on ongoing trials. Existing official registers like clinicaltrials.gov or clinicaltrialsregister.eu are usually quite difficult to understand and also do not contain relevant links to patient information, e.g. to the informed consent document, trial websites etc.
To improve the situation on availability of CML trials for patients, the CML Advocates Network is now hosting an inofficial database of current academic and industry-sponsored CML trials. The trial registry is run by patients for patients and is set up as a dynamic register in which data are updated on an ongoing basis. You can access the trial registry here: http://www.cmladvocates.net/cmltrials. For more general information on clinical trials, read „What are clinical trials?“ at http://www.cmladvocates.net/abouttrials.
However only some trials are listed in our register today. We need your help to register all ongoing trials and keep the information up to date. Do you know of any study that is not yet listed here that is currenty recruiting CML patients? Please let us know by using this form: http://www.cmladvocates.net/trialsubmit.
Welcome, Alliance of Chronic Myeloid Leukemia Patients of Georgia - now 83 patient organisations from 65 countries in the CML Advocates Network
We are delighted to welcome "The Alliance of Chronic Myeloid Leukemia Patients of Georgia" as a member of the CML Advocates Network. The network now connects 83 organisations from 65 countries across all continents. See the list of CML groups in the Network on our world map.
|In this second report from the annual meeting of the American Society of Hematology (ASH), we would like to cover some of the long-term follow-up data on first-line CML therapies: the 5-year update on the Nilotinib first-line trial ENESTnd, as well as the 4-year update on the Dasatinib first-line trial DASISION. The results of all three approved first-line TKIs Imatinib, Nilotinib and Dasatinib continue to be excellent when applied in first line, with low rates of progression, increasing rates of deep molecular responses. For those with resistance and intolerance against these three TKIs, at least two additional TKIs are becoming available in an increasing number of countries. CML has turned from a life-threatening disease into a chronic condition for most patients with a near-normal life expectancy. Given research conferences mostly cover unresolved topics, this year's CML sessions at ASH seemed to focus on mainly three topics: how safe and successful is stopping all therapy in deep molecular response, how do we manage serious side effects in some patients, and what role do pre-existing other diseases (e.g. cardiovascular risks that are more frequently present in elderly patients) play when we choose TKI therapy? This (lay) report focuses on ASH presentations that focused on these topics.||
This year's "CML Education Session" at the American Society of Hematology (ASH) Annual Meeting was entitled "Refining/Redefining the State of the Art in treating Chronic Myeloid Leukemia". ASH education sessions usually give a broad overview on recent advances in understanding of a disease, how this translates into clinical efforts to prevent disease progression and drug resistance, as well as research strategies towards long-term disease control and cure. While earlier years focused on therapies that increased survival, this education session demonstrated that the focus in CML is slowly shifting to an era where survival is close to that of the general population. Today's efforts focus on treatment-free remission and quality of life. Cure for all would of course be the next big thing, but even though much is being tested in that space, cure is still far away on the horizon for most patients.
Much has been done: Activity report of the CML Advocates Network & Leukemia Patient Advocates Foundation
The "Leukemia Patient Advocates Foundation" is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives and survival of patients affected by leukemia by supporting leaders of patient organisations in providing help and support. It hosts the global "CML Advocates Network" connecting more than 80 leukemia patient organizations in more than 60 countries, and hosts the "CML Horizons" annual global leadership for patient leaders from all world regions. The Foundation collaborates with all stakeholders involved in research, treatment and care of leukemia patients.
The Leukemia Patient Advocates Foundation has been registered in October 2011 as a non-profit organisation. This is the first report of the Foundation’s activities in the period of October 2011 to December 2013.
(in English -- in Deutsch/German)
The CML Advocates Network has conducted a large international study with 2546 patients from 79 countries in 12 languages. It aimed to investigate motivations and behavioural patterns of adherence in CML, and subsequently support hematologists and patients to improve adherence and develop adherence tools. After first data had been presented at the scientific programme of EHA congress in June 2013, the CML Advocates Network is presenting new results of its multivariate analysis on factors predicting intentional non-adherence at the anuual congress of the American Society of Hematology (ASH) in New Orleans 2013! Click on "Read more" for the abstract, or here to download the poster.
The European Hematology Association (EHA) has developed a website survey where doctors, patients and healthcare professionals can report unavailability of medicines for haematological diseases. Over the course of the following months, EHA will collect and analyze these reports so that we can develop a coherent picture of the scope, causes and consequences of these problems in Europe. At the moment such an overview does not exist which makes it difficult for European politicians and policy makers to take measures that are effective have high impact.
As the success of our efforts fully depends on the quantity and quality of reports, EHA has asked for our help: If you are aware about unavailability of medicines in Europe, please go to EHA's survey at https://www.surveymonkey.com/s/GWH3DK5.
EHA will make all collected evidence publically available, so it is also of use for our community.