CML Advocates Network's publication on adherence to CML therapy accepted by Journal of Cancer Research and Clinical Oncology
Hooray! Our publication of the CML Advocates Network's adherence survey has been accepted in the Journal of Cancer Research and Clinical Oncology. Our adherence study is one of the largest adherence studies made so far, with 2546 patients from 63 countries and 79 CML patient organisations and very important findings on the motivations and risk factors of patients on intentional and non-intentional non-adherence, potential tools to drive adherence. It is also a great example of evidence-based patient advocacy!
This publication has been a tough ride for us non-scientists over the past three years, given we needed support to do the data analysis and write a scientific paper. Authors were the patient advocates Jan Geissler, Giora Sharf, Mina Daban, Jan de Jong, Tony Gavin, Jana Pelouchová, Euzebiusz Jan Dziwinski, plus Dr. Verena Hoffmann who has been the scientific author, supported by Prof. Joerg Hasford and!
The news of acceptance for publication was received today, the paper will hopefully be in the public soon.
More info about our adherence survey can be found at http://www.cmladvocates.net/adherence
EuroBloodNet European Reference Network starts with the hematology European Patient Advocacy Group (ePAG) - and CML Advocates Network is in!
24 European Reference Networks, based on an initiative of the European Commission and EU Member States, are networks of healthcare professionals, centres of expertise and patient organisations aimed at improving quality, safety, and access to highly specialised healthcare in Europe.
The EuroBloodNet European Reference Network, covering rare haematological diseases, has kicked off on 27 January 2017 in Paris with 66 partner organisations from 15 countries. The Leukemia Patient Advocates Foundation, CML Advocates Network and CLL Advocates Network are deeply involved in EuroBloodNet to make sure it delivers to patients' needs.
Welcome, Pacientes LMC (Spain) - now 113 patient organisations from 84 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Pacientes LMC based in Spain. The CML Advocates Network now totals at 113 member organisations in 84 countries worldwide! See the list of CML groups in the Network on our world map.
iCMLf Forum 2016 Webstreams now available
At the annual ASH congress, the iCMLf, in collaboration with The Max Foundation, holds its annual "iCMLf Forum for Physicians from Emerging Regions". Presenters give the local emerging regions perspectives on each topic, followed by iCMLf experts from western countries and a discussion with the audience. The Forum was opened with a keynote from Dr. Brian Druker on meeting the new challenges in CML therapy. Then, Professor Tapan Saikia from India and Professor Andreas Hochhaus from Germany covered the challenges of CML frontline therapy. Afterwards Dr Anthony Oyekunle from Botswana and Dr Delphine Réa from France covered the issue of comorbidities when managing CML. The webstreams are now available.
CML Horizons 2017 Registration Now Open - 26-28 May 2017
Register here - Preliminary Program - Conference fee - Scholarship Application
- Call for Abstracts - Call for Posters - Travel - Visas - Venue & Accommodation - Acknowledgements - Call for Nominations
Registration is now open - Join us for the 15th “CML Horizons: Learn. Share. Grow" Conference
DATE: 26TH TO 28TH MAY 2017
LOCATION: FRANKFURT, GERMANY
Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians.
This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization.
IMI Project "HARMONY - Big Data for Better Health Outcomes" launched, CML Advocates Network involved in coordinating patient community input
The Innovative Medicines Initiative (IMI) has approved HARMONY, a 5-year project that aims to foster better access and care for patients with various hematologic malignancies (HM) with the use of big data. The project is made up of 51 partners from 11 European countries, including 7 pharmaceutical companies.
We are very excited that CML Advocates Network will be contributing to this unique project. Jan Geissler is the Work Package leader that will be coordinating HARMONY's Stakeholder Forum and patient input of the haematology patient community into this project. The project will kick-off on 16 January 2017 in Salamanca, Spain.
