EHA 2017 in Madrid, Spain: Patient Advocacy Programme
Not many weeks left until the European Hematology Association's annual congress opens its doors in Madrid, Spain. We are excited to see many of you at #EHA22 2017!
Over the past months, we've been working hard with the EHA team to set up an attractive patient advocacy programme during the congress. We have a joint booth of all European patient advocacy organisations, and once again also having a “Patient Advocacy Track” within the scientific program during the congress. Up to 50 free congress registrations were offered to patient advocates, so we hope there will be strong patient attendance!
Click on "Read more" what is offered specifically for patient advocates, hematologists and other stakeholders at EHA this year.
Free EHA congress registrations for representatives of haematology patient organizations: Deadline 29 April 2017!
This year EHA Congress will be held on the 22-25 June 2017 in Madrid, Spain. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is once again offering a “Patient Advocacy Track” within the scientific program.
EHA FELLOWSHIP -- APPLY NOW, UNTIL 29 APRIL!
Once again in 2017, EHA will provide 50 Fellowships for their EHA congress which will be held during the 22-25 June 2017 in Madrid. The Fellowship provides free access to the full congress, but also includes a compulsory "capacity building programme" to educate all attending advocates and further their development and knowledge about haematology and science.
In collaboration with EHA and the European Reference Network EuroBloodNet, we're taking the next level this year and will provide a "EHA Capacity Building Meeting" for all Fellows on 22 June, from 14:00 - 17:00.
In this meeting, EHA Fellows will hear about EuroBloodNet, the ePAGs, about interpreting scientific data, and about how to get the best out of a scientific conference EHA (for all disease areas). This will then be followed with a summary of the most important data presented at EHA, specifically for Fellows in MDS, Myeloma, Acute Leukemias, Lymphomas & CLL, MDS and CML. The capacity building meeting on 22 June will be mandatory for all EHA Fellows. Priority will be given to advocates who have attended last year's capacity building event and/or are engaged in European hematology patient networks.
Please encourage your most important science-interested advocates to apply for an EHA Fellowship to attend EHA and speak to your umbrella group if they may be able to support EHA Fellows with travel costs.
The CML Advocates Network can provide a limited amount of travel grant of up to 500 EUR to those European CML Advocates that receive a fellowship.
To apply for an EHA Fellowship, please ask your advocates to register HERE
Deadline for applications is 29 April 2017, accepted advocates will be informed in the first week of May.
If you have any questions, please touch base with lidija@lepaf.org
Our publication in Journal of Cancer Research and Clinical Oncology: Factors influencing adherence in CML and ways to improvement
Non-Adherence to treatment in chronic diseases is a well-known problem. The dramatic evolution in CML treatment in the last decade, resulting from the introduction of Imatinib and followed by second generation TKIs, has turned CML into a kind of chronic disease where patients need to take their medication on daily basis.
In 2012, the CML Advocates Network decided to conduct a large, scientifically sound international study on adherence. It enrolled patients from 9/2012 to 1/2013 based on a comprehensive questionnaire in 12 languages. The aim of this study was to investigate motivations and behavioral patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2.546 questionnaires filled in by CML patients from 63 countries and 79 CML patient organisations were returned.
Our publication “Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries” 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.
Our paper has now been published in the Journal of Cancer Research and Clinical Oncology
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.
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.
