Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myeloid 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.
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.
"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!
the CML Advocates Network has conducted a large international study enrolling patients from 9/2012 to 1/2013 in 12 languages. The aim was to investigate motivations and behavioural patterns of adherence in CML, and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2546 CML patients from 79 countries responded. After the first results were presented in the oral sessions of the scientific programme of EHA 2013, the CML Advocates Network has been invited to present its new multivariate analysis on factors predicting intentional non-adherence at the ASH Congress in New Orleans 2013!
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
Now available: Best Practice Toolbox on Generics
We are happy to announce that the Generics Section on our website has been complemented by a "Best Practice Toolbox" for advocacy. The Toolbox provides useful advice and tools on how to address this topic as an advocacy organization when generics or copy drugs are being introduced in your country.
The current version of the Toolbox was provided by courtesy of our member organisation CML Association of Serbia, whom we want to thank for sharing their experience in how to advocate for quality drugs in CML.
We kindly invite all CML Advocates Network members to visit our Toolbox here:
Our "Best Practice Toolbox" is a community-driven initiative and intended to grow over time. We really look forward to receiving further best practice-examples and reports on how you advocate for quality-controlled treatments in your country!
We hope that you will find our Resource & Knowledge Center and the new Toolbox very useful and look forward to your active participation and feedback!
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