CML Horizons 2014 webstreams of all presentations now available!

CMLHZ2014 PanelWebstreams of all presentations held at CML Horizons 2014, the global meeting of CML patient advocacy groups, are now available.

The faculty included Neil Shah (USA), Qian Jiang (China), Andrija Bogdanovic (SR), Giuseppe Saglio (IT), Susanne Saussele (DE), Sarah Liptrott (IT), Yoseph Caraco (IL), Tamás Beretzky (HU), Martin Godfrey (UK), Annette Freidank (DE), and many more - as well as a keynote by Dr. Brian Druker!

The presentations covered highly relevant topics like updates from CML research, discussions around CML generics, information about drug interactions and pharmacology, issues around sexuality and self-esteem, the use of social media in advocacy, building a patient advocacy strategy, and reports from the key challenges in CML care in the five world regions.

Go to our CML Horizons 2014 page to listen to the presentations!

The CML Advocates Network welcomes two new members: now 89 patient organisations from of 67 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe are delighted to welcome "DANCE WITH CANCER" (Turkey) and "FUNDACIÓN COLOMBIANA DE LEUCEMIA Y LINFOMA, FCL" (Colombia) as new members of the CML Advocates Network. The network now connects 89 organisations from 67 countries across all continents. See the list of CML groups in the Network on our world map.

CML Horizons 2014: Presentations available now, video streams will follow soon!

CML-Landscape-Belgrade-2014-2CML Horizons 2014, the 12th annual international conference for organizations representing people with CML was held from 2 to 4 May 2014 in Belgrade, Serbia. We were thrilled to have 119 delegates from 58 countries attending this year´s conference. The presentations of all sessions (PDF files) are available now! Please share the links in your communities! Very soon we will also share the webstreams and photos of the conference.

 

Welcome, The Canadian CML Network and Ethiopian CML Foundation! Now 85 patient organisations from 66 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe are delighted to welcome "The Canadian CML Network" and "Ethiopian CML Foundation" as members of the CML Advocates Network. The network now connects 85 organisations from 66 countries across all continents. See the list of CML groups in the Network on our world map.

The European Cancer Patient's Bill of Rights launched with CML Advocates Network's support on World Cancer Day

ECC-bill-of-rights-signatureOn 4 February 2014, marked World Cancer Day 2014, a group of Europan patient advocacy organisations, healthcare leaders and Members of the European Parliament against Cancer (MAC) came together to launch the European Cancer Patient’s Bill of Rights in the European Parliament in Strasbourg. The CML Advocates Network, being one of the ECC Partners that was deeply involved in the drafting, welcomed the launch of the Cancer Patient's Bill of Rights, which is the result of over two years of work. It is a call to action to address the significant disparities that exist for European cancer patients today, and a call for more patient involvement and empowerment.

The Bill of Rights has just been published in "The Oncologist" and "The Lancet". The Bill of Rights is available in English, French, German, Greek, Italian, Polish, Romanian and Slovenian on its official website. Some photos taken at the launch meeting in the European Parliament, which was attended by the EU Commissioner for Health Tonio Borg as well as by members of the European parliament and the former French minister of Health, are also available, as is Jan Geissler's presentation during the launch meeting - with the "Faces of CML" included.

Read more ...

50 free registrations for patient advocates at the European Hematology Association (EHA) Congress 2014

ehaEHA 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

4 Feb is World Cancer Day - Patients' rights at the center

WorldCancerDay Logo RGB 2012Today, 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

Welcome, MaxCare Nigeria - now 84 patient organisations from 66 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe 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.

CML Horizons 2014: Registration now open!

CML-Landscape-Belgrade-2014We 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

Read more ...

We need your feedback on our summary of the ELN treatment recommendations!

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

Understanding CML terminology - our new CML glossary

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.

Inofficial CML trial registry launched

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.

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