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)
CML Advocates Network presents their adherence survey at ASH 2013 - poster available for download
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.
EHA asks patients to report the unavailability of hematology medicines in Europe
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.
Save the date: CML Horizons 2014, 2-4 May 2014, Belgrade / Serbia
"New Horizons" and "CML Horizons" have been key events in the global CML advocacy calendar since New Horizons was first established in 2003. We are pleased to inform you that "CML Horizons 2014" will be held on 2-4 May 2014 in Belgrade, Serbia.
We very much hope that leaders of CML patient organisations from all across the world will be able to attend the 12th conference of its kind - with an exciting program on CML advocacy and CML science, and great networking opportunities with CML advocacy leaders around the globe!
Please save the date (2-4 May 2014) in your calendars!
Now 82 patient organisations from 64 countries are members of the CML Advocates Network
We are delighted to welcome two new members to "CML Advocates Network", which now connects 82 organisations from 64 countries across all continents. Our newest members are:
- South Korea: Leu Hiking Club
- Iraq: Leukemia Patient Care Association
See the list of CML groups in the Network, and our worldwide map.
Now 80 patient organisations from 63 countries are members of the CML Advocates Network
The "CML Advocates Network", an international platform for patient groups supporting patients and relatives suffering from "Chronic Myeloid Leukaemia" (CML) now connects 80 organisations from 63 countries across all continents. This worldwide network offers support by sharing of best practice, information and advice for CML patient representatives. We are delighted to welcome our newest member:
- Nepal: Blood Cancer Society Nepal
See the list of CML groups in the Network, and our worldwide map.
Group by group, advocate by advocate, and survivor by survivor, World Now available: our resource & knowledge center on generics, copy drugs and substandard drugs
Over the next three years, CML patients in more and more countries will be facing the use of generic TKIs and copy drugs to treat CML. To provide patient organisations with background information on this important issue, we have launched a Resource & Knowledge Center on CML generics, copy drugs and substandard drugs. It provides
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an inofficial directory listing all CML tyrosine kinase inhibitors (TKIs) that are - to our knowledge - available to date.
- the results of our survey on generics, copy drugs and substandard drugs in CML which was conducted by CML Advocates Network in collaboration with iCMLf in March 2013. The survey summarizes 86 responses from 55 countries - the data is also available for download!
- the webstreams of our session on CML generics and substandard drugs at "CML Horizons 2013", which featured a presentation of the WHO, of the CML Association of Serbia and the CML Advocates Network
- an index of scientific articles on the use of generic drugs in CML treatment
- our blog on CML generics. This is only available after login for members of the CML Advocates Network to keep discussions private
- a glossary that explains with key terms and definitions in the area of drugs and generics
We will complement this by a "Best Practice Toolbox" for advocacy on generics in a few weeks, which is currently under construction. The "toolbox" will provide useful advice and tools on how to address this topic as an advocacy organisation when generics or copy drugs are being introduced in your country.
We are looking forward to your active participation in the blog and the new knowledge center, and are happy to receive your feedback!
CML Horizons 2013: Report available now!
CML Horizons 2013, the 11th annual international conference for organizations representing people with CML, was held from 3 to 5 May 2013 in Prague, Czech Republic.
The detailed report of the conference can now be accessed here. You can also access the webstreams and photo gallery here.
Enjoy reading the report and feel free to share it in your communities!
The report is available in: English, German, Hebrew
Presentation at EHA: Non-adherence In Chronic Myeloid Leukemia: Results of a Global Survey of 2546 CML Patients in 79 Countries
The global CML Advocates Adherence Survey was presented at the European Hematology Association (EHA) Congress 18 in Stockholm on 16/6/2013 in the oral session "08. CML - Clinical" (EHA Abstract S1104). Authors were Giora Sharf, Verena Hoffmann, Felice Bombaci, Mina Daban, Fabio Efficace, Joëlle Guilhot, Jana Pelouchová, Euzebiusz J. Dziwinski, Jan de Jong, Anthony Gavin, Jan Geissler. The presentation is available on as a webstream and as PPT download - and now also a PatientPower interview!
CML Horizons 2013: Video streams & Presentations available now!
CML Horizons 2013, the 11th annual international conference for organizations representing people with CML was held from 3 to 5 May 2013 in Prague, Czech Republic. We were thrilled to have 141 participants from almost 60 countries attending this year´s conference. Video streams, presentations of all sessions as well as a photo gallery are now available! The web streams provide the opportunity for all those that could not join us in Prague to see the state of play in CML treatment and CML patient advocacy. Please share the links in your communities if you wish.
Patient Advocacy at European meetings "18th EHA Congress" and "ECC 2013"
In case CML patient advocates consider to attend the international meetings of the European Hematology Association (EHA, 13-16 June 2013) and European Cancer Congress (28 Sept - 1 Oct 2013), we would like to update you on opportunities to attend these meetings and contribute to the programme. Please note the tight deadlines mentioned below if you want to attend or contribute!
