CML Advocates Network

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!

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.

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 CML Day is raising awareness about the needs of people living with CML around the world through numerous simultaneous events being organized by leukemia patient associations on all continents on 22nd of September.

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

• 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!