The CML Advocates Network welcomes its newest member: now 90 patient organisations from of 68 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe are delighted to welcome our newest member: "CanSurvive" from Egypt! CanSurvive is the first Egyptian member of the CML Advocates Network. From today, the Network connects 90 organisations from 68 countries across all continents. See the list of CML groups in the Network on our world map.

CML Horizons 2014 photos available now... conference report coming soon!

CML-Landscape-Belgrade-2014-1The top 400 pictures taken during CML Horizons 2014, the global meeting of CML patient advocacy groups, are now available!

You will find all photos in our CML Horizons 2014 Photo Gallery. If you wish to see photos of previous conferences and events, please visit the CML Advocates Network Gallery (member only area!).

The conference report will follow soon, so check back again!

And now: enjoy some impressions of a great conference!

Inofficial CML trial registry updated

Our inofficial CML trials registry has been updated with new CML studies, e.g. with Nivolumab and Ruxolitinib. See http://www.cmladvocates.net/cmltrials. Do you know of any study that is not yet listed in our inofficial registry? Please let us know using the form on cmladvocates.net!

EHA 2014: Patient Advocacy Programme

ehaJust some more days until the European Hematology Association's annual congress opens its doors in Milan. We are excited to see many of you at EHA 2014!

Over the past months, we've been working hard with the EHA team to set up an attractive patient advocacy programme during the congress, on having a joint booth of all European patient advocacy organisations, and - for the first time this year - also having a one-hour meeting of all patient advocates during the congress. Up to 50 free congress registrations were offered to patient advocates, so we hope there will be strong patient attendance!

In a nutshell, this is what is offered specifically for advocates this year:

  • EHA Patient Advocacy Booth (booth #206) as a central meeting place of all patient advocates and their peers
  • Patient Advocates Meeting (FRI 11:30-12:30, Room Yellow), meeting for all patient advocates in order to strengthen collaboration and links between our patient advocacy groups
  • Patient Advocacy Session "Generics in Haematology: The doctors’ and patients’ perspective" (Sat 8:00-9:15, Room Amber 5+6 SW 2)
  • Patient Advocacy Session "The challenges of young patients with old people's diseases" (Sat 9:30-10:15, Room Amber 5+6 SW 2)
  • ESH-EHA Joint Symposium "What do you mean, he can’t have the treatment? An interactive session for haematologists and patients" (Sat 11:45-12:45, Amber 5+6 SW2)
  • EHA-ASH Joint Symposium "Access to medicines and fair pricing: The cost of innovative drugs" (Sat 14 June, 13:15-14:15, Room Silver, NW 2)
  • EHA Advocacy Session "The Future of Hematological Research in Europe" (Sat 14 June, 16:15-17:30, Room Amber 5+6, SW 2)

Find a detailed document describing the patient advocacy programme at EHA 2014 here.

If you are coming to EHA,don't miss any of them, I think they will all be really interesting!

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.

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