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Calling CML Patient Advocate Leaders to apply for the 3rd EUPATI Patient Expert Training Course

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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.

IMG 0348So 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.

Read more ...

ASH 2016: Interviews about hot topics in chronic myeloid leukemia

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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.

Read more ...

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

JOCRHooray! 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!

16195573 10211424380112654 8335182591519517615 n24 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.

Read more ...

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.

CML Horizons 2017 Registration Now Open - 26-28 May 2017

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Register here - Preliminary Program - Conference feeScholarship Application
- Call for Abstracts - Call for Posters - Travel - Visas - Venue & Accommodation - Acknowledgements

 

Registration is now open - Join us for the 15thCML Horizons: Learn. Share. Grow" Conference

DATE: 26TH TO 28TH MAY 2017
LOCATION: FRANKFURT, GERMANY

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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. 
 
 

Register Now!

 


 

IMI Project "HARMONY - Big Data for Better Health Outcomes" launched, CML Advocates Network involved in coordinating patient community input

EHA Logo HARMONY Programme def MAY2016

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.

Read more ...

CML Horizons 2017 - Save the date: 26-28 May 2017

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Join us for the 15thCML Horizons: Learn. Share. Grow" Conference
DATE: 26TH TO 28TH MAY 2017
LOCATION: FRANKFURT, GERMANY

download

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. 
 
Registration process will start the 2nd week of January 2017 and will inform you as soon as the registration platform is online.

Read more ...

ASH 2016 update on stopping CML treatment with TKIs in deep molecular response

American Society of Hematology logo.svg 1 Tyrosine kinase inhibitors (TKI) have dramatically improved survival of CML and made it a chronic disease. However, life-long therapy is still advised according to expert recommendations and the product labels of current TKI treatments. Depending on the choice of TKI, about 40-70% of CML patients reach a deep molecular response, meaning a BCR-ABL ratio of 0.01% (MR4) or below. Given it had been observed that some patients were able to stop treatment in deep remission without a recurrence of the disease, the effectiveness of stopping TKI treatment of CML patients at large having a sustained, deep molecular response is a key question that is being investigated in various studies, and is probably the most debated CML topic at this year’s ASH.

We are summarizing the most important presentations, discussions and posters on that important topic at the ASH congress this year.

Read more ...

Welcome, CML Palestine (Palestine) - now 110 patient organisations from 83 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: CML Palestine based in Palestine. The CML Advocates Network now totals at 110 member organisations in 83 countries worldwide! See the list of CML groups in the Network on our world map.

Today is World CML Day - 9/22

WCMLD 2013 0922logo día mundial LMCLogo Today TogetherTODAY IS WORLD CML DAY!

One day, one community, one life changing reality… Today we unite to take World CML Day global!
Today we are together to take a stand, share our needs and raise awareness!

Screenshot CML Today 1Screenshot CML Today 2Today and all week long in September organizations around the globe are celebrating World CML Day through their activities, by sharing their achievements over the past year and by pointing out the problems they are still facing.

CML ADHERENCE APP “CML Today” is celebrating its 1st birthday! “CML Today” is an app that has been developed to support adherence to TKIs as well as to track patients` PCR results. The mobile app is now available in 7 languages: English, German, French, Spanish, Portuguese, Hebrew and Arabic with more languages to follow. You can download „CML Today“ free-of-charge from the Apple App Store (iphone) and in the Google PlayStore (Android). Please talk about “CML Today” and encourage CML patients to use “CML Today”!

Please also check out the activities that are taking place all over the world on World CML Day 2016 and the campaign materials developed by members of the CML Advocates Network - and do not forget to share your activities with us and other groups! Last but not least, don´t miss our Facebook-page!

More information on World CML Day 2016 can be found here.

The CML Advocates Network wishes everybody an inspiring and successful World CML Day 2016!

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Call for Abstracts: CML Advocacy Best Practice presentations at CML Horizons 2017.Submit your abstract here… twitter.com/i/web/status/8…

Wednesday, 22 March 2017

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VIDEO: @jangeissler on new European programs and initiatives relevant to #hematology: ow.ly/HciI309ZN0T @cmlnet #bloodcancer

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Factors influencing adherence in CML and ways to improvement ow.ly/FjgD309ZP9H > @cmlnet #CML

Retweeted Friday, 17 March 2017