Welcome, Power of CML, Egypt! Now 116 patient organisations from 86 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Power of CML based in Egypt. The CML Advocates Network now totals at 116 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

CML Clinical Trials Registry now lists 35 ongoing studies

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Patients wishing to participate in a clinical study often look for a central source of information where they can find easy-to-understand facts on ongoing trials. 

Official trial registries like clinicaltrials.gov or other trial registries are available but tend to be complex and difficult to use for patients.

To fill the need for a single source of information on CML studies in plain language, CML Advocates Network set up an unofficial online CML Trials Registryin 2013.

The database contains a brief description of ongoing CML trials initiated by academia (universities) or pharmaceutical companies.

Currently, 24 clinical studies are listed that are actively recruiting patients. Another 11 studies are still ongoing but no longer including new patients.

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Welcome, Philadelphia LMC, Algeria! Now 115 patient organisations from 86 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Philadelphia LMC based in Algeria. The CML Advocates Network now totals at 115 member organisations in 86 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

EHA 2017 in Madrid, Spain: Patient Advocacy Programme

ehaNot 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.

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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.

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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.

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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.

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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 - Call for Nominations

 

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

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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.

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