CML Advocates Network

EHA is providing 50 free congress registrations for leaders of hematology patient organisations to give patient advocates the opportunity to attend the congress, but they will not cover travel or accommodation costs. Deadline for free registrations is 26 March 2014. Please note this is for leaders of patient advocacy organisations only, not for individual patients in their personal interest, health professionals or other stakeholders. And please also note that the free registrations are subject to confirmation by EHA.

If you are a patient advocate that will attend EHA 2014, please reserve your free registration here

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 delighted to welcome "MaxCare Nigeria" as a member of the CML Advocates Network. The network now connects 84 organisations from 66 countries across all continents. See the list of CML groups in the Network on our world map.

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.