Calling CML Patient Advocate Leaders to apply for the 3rd EUPATI Patient Expert Training Course
THE EUPATI PATIENT EXPERT TRAINING COURSE IS TAILORED TO PATIENT ADVOCATES AND TURNS THEM INTO PATIENT EXPERTS IN MEDICINES RESEARCH AND DEVELOPMENT.
DEADLINE FOR APPLICATIONS IS 31 MARCH 2017
The EUPATI Patient Expert Training Course in Medicines Research & Development is an exciting and unique opportunity, offering patient advocates expert-level training that is specifically tailored for them.
This 14-month tailor-made course, based on e-learning with additional two face-to-face training weeks, gives you the tools as CML patient advocate leaders to be able to contribute to be part of the research and development process and all related regulatory processes. It helps to understand all processes of pre-clinical and clinical research, drug safety, benefit/risk assessment and health technology assessment at an expert level.
So far, three CML advocates members have participated in the EUPATI course: Conny Borowczak, Aimo Stromberg and Sarunas Narbutas. Read about Conny's experience by clicking on "Read more", and contact them if you have questions.
We encourage European patient advocates (from the wider European region as defined by WHO) to apply before the deadline of 31st March at https://www.eupati.eu/third-cycle-apply-now/
Click on read more for Testimonial.
ASH 2016: Interviews about hot topics in chronic myeloid leukemia
The American Society of Hematology’s annual meeting brings together hematologists from around the world to discuss critical issues in hematology, examines the latest clinical advances in this area and explores the year's most significant scientific discoveries and updates.
Jan Geissler, Co-founder of the CML Advocates Network and chair of the German leukemia patient platform Leukaemie-Online has been interviewed by the Video Journal of Hematological Oncology. during ASH 2016 on some of the hot topics at ASH 2016.
We are happy to share with you these short video interviews that highlight a CML patient’s view on the safety of stopping treatment in Chronic Myeloid Leukemia, the new BCR-ABL inhibitor ABL001 for CML treatment, generic Imatinib in the age of Imatinib patent expiration, patient involvement in th ASH congress, as well as some European programs and initiatives in hematology like HARMONY and the European Reference Network EuroBloodNet.
Welcome, CML Zimbabwe! Now 114 patient organisations from 85 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: CML Zimbabwe based in Zimbabwe. The CML Advocates Network now totals at 114 member organisations in 85 countries worldwide! See the list of CML groups in the Network on our world map.
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.
