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Free EHA congress registrations for representatives of haematology patient organizations: Deadline 29 April 2017!

ehamadrid2017

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.  

eha

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  

We are looking forward to meeting all the haematology advocates in Madrid!

 

 

Our publication in Journal of Cancer Research and Clinical Oncology: Factors influencing adherence in CML and ways to improvement

paperadherence2Non-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

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iCMLf Forum 2016 Webstreams now available

iCMLf Forum 2016 Podium

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.

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Our publication in LEUKEMIA: Patients' declaration on the use of generics in CML treatment

2016-08-26 16 21 01-Leukemia - Chronic myeloid leukemia patients call for quality and consistency whMarket exclusivity for imatinib has lapsed in 10 EU countries, most countries to follow in 2016. CML patients have been increasingly exposed to generics and copy drugs in the treatment of CML, raising concerns about outcomes when patients are switched between products for non-medical reasons.

A survey of patient organisations and physicians by the CML Advocates Network in 2013 determined that generic imatinib and dasatinib were available in 32 countries. In 2014, CML patient organizations released a declaration, calling for quality and consistency when TKI generics are prescribed, demanding data on bioequivalence and clinical equivalence to the originator drug. Patients should not be switched between products with the same substance for non-medical reasons. If a switch is enforced, it should not happen more than once a year, with sufficient follow-up assessing safety and efficacy. In case of loss of response or increase in toxicity after switching, switching to the previous treatment or another treatment should be allowed. More frequent molecular monitoring post-switch should allow early detection of differences in effectiveness or toxicity. These recommendations by the patient community may support experts' discussion on CML management with TKI generics.

Our paper has now been published in the journal LEUKEMIA, doi: 10.1038/leu.2016.220

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European Reference Networks, a unique opportunity to take collaboration and patient care in hematology to the next level, was a core topic at EHA 2016

ERNThe 21st European Hematology Association’s Congress (EHA, 9-12 June 2016) was abuzz with networking between over 10.000 participants who travelled from all over the world to Copenhagen. The EHA Congress combined sessions and a diverse range of topics around Hematology highlighting state-of-the-art clinical practice, recent advances, new data and views from different stakeholders and international organizations. A hot topic this year were the European Reference Networks (ERNs). The CML Advocates Network is actively engaged in the upcoming ERN on rare hematological diseases.

Read more ...

Please sign the petition to reconsider India's government decision of levying customs duty on donated CML drug

Please sign this petition run by the Indian patient organisation "Friends of Max", calling on the Indian government to reconsider their government decision of raising significant import taxes on free Glivec donated to Indian CML patients through a patient assistance programme. For the past 13 years, Glivec was provided for free as a donation to CML patients, but now the Indian government may raise import taxes on a hypothetical financial value of the donated Glivec. This threatens the continuation of the free donation of the drug to thousands of CML patients in India. Please sign the petition at Change.com.

Free EHA congress registrations for representatives of hematology patient organizations: Deadline 3 May 2016!

ehaThis year's EHA Congress will be held 9-12 June 2016 in Copenhagen, DK. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program.

As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Copenhagen. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.

If you are interested in a free registration, please state your interest in a free registration here.

Deadline for free registrations is 3 May 2016! There will be no extension of the deadline and no late registrations. EHA, MDS Alliance and CML Advocates Network will do their best to allocate the 50 free registrations fairly amongst organisations and advocates. Please note that registrations are to be confirmed by the EHA office -- the MDS Alliance and CML Advocates Network just collect statements of interest on behalf of the patient community. We will let applicants know as soon as possible.

For more information on the 21th EHA congress, see here.

Register now for CML Horizons 2016, 6-8 May 2016, Ljubljana, Slovenia

CML-Logotip-Ljubljana-2016-2We are looking forward to the 14th CML Horizons conference, held in Ljubljana / Slovenia on 6-8 May 2016. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community, and provides a unique opportunity for participants to share experiences and best practice. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.

Registration is now open for leaders of CML patient organisations.

Read more ...

Free EHA congress registrations for representatives of patient organizations: Deadline 24 March 2015!

ehaThis year's EHA Congress will be held 12-15 June 2015 in Vienna, Austria. Thanks to very patient-centric thinking, EHA continues to work closely with the patient community and is again offering a “Patient Advocacy Track” within the scientific program. A team of leading patient advocates is currently working on the sessions for the EHA Patient Advocacy track and making a great effort to cover topics of priority for patients across diseases that are – at the same time - attractive to hematologists.

As in previous years, EHA is again providing 50 free congress registrations for leaders of hematology patient organizations to give patient advocates the opportunity to attend the EHA congress in Vienna. The free registrations are only available to representatives of patient organizations, and EHA is requiring them to attend our capacity building session (planned for Saturday afternoon). The registration allows access to the scientific congress, but will not cover travel or accommodation costs.

If you are interested in a free registration, please reserve your free registration here.

Deadline for free registrations is 24 March 2015! Please also note that the free registration are subject to confirmation by the EHA office - the CML Advocates Network just collects statements of interest on behalf of the patient community.

For more information on the 20th EHA congress, see here.

Register now for CML Horizons 2015, 1-3 May 2015, Barcelona, Spain!

cmlhz15logoWe are looking forward to the 13th CML Horizons conference, held in Barcelona / Spain on 1-3 May 2015. The CML Horizons Steering Committee has worked hard to ensure that the conference includes topics of importance to the CML patient community, and provides a unique opportunity for participants to share experiences and best practice. We hope that as a result of this meeting, CML patient groups globally will improve their capacity to meet the needs of their patients, and strengthen their advocacy activities.

Registration is now open for leaders of CML patient organisations.

Read more ...

EHA 2014: Generics in haematology, young people in old people’s diseases, access to medicines, fair pricing: Key concerns of patients and clinicians tackled in the EHA Advocacy Track 2014

IMG 1721A stiffer regulatory environment for clinical research, heavy cost pressure on healthcare systems, as well as the advent of the Internet are changing the dynamics between healthcare providers, patients, policy makers and their healthcare system. Complementing the scientific programme of the European Hematology Association (EHA) Congress 2014, EHA has put patients at the centre by again offering a full-day Advocacy Track. It tackled sensitive issues like generics in haematology, young patients with old people’s diseases, as well as access to medicines and fair pricing. The sessions on 13 June 2014, supported by the CML Advocates Network and Thalassaemia International Foundation, were very popular not only for hematologists, but also nurses, researchers and patient advocates attended the various sessions.

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On World CML Day 9/22, leukemia patients worldwide unite to address the courage and hope required to live with chronic myeloid leukemia, and call for access to best available treatment and care for all patients

World CML Day 2014
Group by group, advocate by advocate, and survivor by survivor: on World CML Day on 22 September, the global patient community is raising awareness about the needs of people living with chronic myeloid leukemia (CML). Simultaneous events, publications and meetings on all continents put a spotlight on the real needs of patients and their relatives, and demonstrate the power and unity of a unique worldwide community that knows no borders. Their brand-new book “Faces of Courage and Hope” further provides an insight into the journeys of 16 CML patients in 15 countries.  
 
Members of the CML Advocates Network, which is today comprised of 90 patient advocacy groups in 68 countries, are honoring World CML Day on September 22nd 2014 through actionable events taking place in their communities. All events worldwide aim to underscore the importance of the needs of people living with CML. The needs of patients in different regions vary largely – from basic challenges of access to treatment and care, over uncertainty on the quality of treatments, to living with cancer as a chronic disease.

Read more ...

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cmlnet
Just a week to meet you at #patient #advocacy Conference #CMLHZ17 Don't forget to bring your printed poster with yo… twitter.com/i/web/status/8…

Friday, 19 May 2017

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@ZPWLC @LeukaemiaCAREuk Looking forward to meet all the #cml #advocates to #learnsharegrow with you Zack! #cmlHZ17… twitter.com/i/web/status/8…

Thursday, 18 May 2017 in reply to ZPWLC

ZPWLC
Only one week to go until #CML Horizons! Looking forward to catching up on all things #CML #advoacy #CMLHZ17… twitter.com/i/web/status/8…

Retweeted Thursday, 18 May 2017