ASH 2014 in San Francisco: Optimizing CML therapy

[ASH2014introTranslations: Russian - German]

The annual ASH meeting is the most important event of the year for researchers in the field of hematology. With more than 30.000 health professionals attending the congress, it serves as the leading platform to present and discuss the latest research results as well as to meet up and discuss collaborative efforts. Some might also call it collective sleep deprivation, with meetings usually starting before sunrise and ending with PowerPoint-supported evening receptions.

Other than at the EHA congress, the ASH meeting unfortunately does not feature a patient advocacy track in the scientific programme – or at least free admission for patient advocates, which results in patient advocates only making up around 0,1% of the total audience. Roughly 35 patient advocates from all continents and across disease areas attended this 56th ASH congress in San Francisco. Amongst them, Giora Sharf and Jan Geissler are reporting some of the latest news on CML presented in presentations and on posters.

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Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages

ELN2013summary-coverThe CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.

It is now available in 16 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).

See our ELN Summary here: http://www.cmladvocates.net/cmlsummary

 

The CML Advocates Network's Clinical Trial Registry now lists six new studies

About a year ago, the CML Advocates Network set up an inofficial clinical trial registry to give CML patients easy access to information on ongoing CML trials: http://www.cmladvocates.net/cmltrials. With the continued input from patients, academic institutions and pharmaceutical companies, who keep submitting up-to-date trial information, the registry has grown and turned into a great source of information. The trial registry contains not only a short summary of the trial, but also (if available) the informed consent documents for patients, a list of the study centers, as well as weblinks to clinicaltrials.gov or the EU Clinical Trials Register. Since the beginning of September 2014 alone, six new studies have been added, and 20 clinical trials are listed in total.

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Now available: Our patient-friendly summary of the ELN CML Treatment Recommendations!

ELN2013summaryThe CML Advocates Network has published the updated patient-friendly summary of the "2013 European LeukemiaNet recommendations for the management of CML. It is made available in English, French, Italian, German, Hebrew, Russian, Polish, Spanish, Portuguese, Arabic and Serbian (as a start). More languages might follow.
 
Our patient-friendly summary of the 2009 version of the European LeukemiaNET Treatment Recommendations on CML has been picked up very strongly by the community, demonstrating the demand of patients to understand the expert recommendations: Our web versions of the patient-friendly summary were viewed 8.300 times in Spanish, 8.600 times in Italian, 14.500 times in French, 17.100 times in English since 2011 - not counting the PDF downloads from our website and printed versions that were disseminated at meetings. The summaries were not only used by patients, but also by physicians as a tool to explain treatment milestones and monitoring in a more understandable way. With great support from the community, our last summary was actually made available in 11 languages.

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Shipment of magnetic pins for World CML Day 2014 pins has ended!

WCMLD-PinsThis is to inform you that no more magnetic pins for World CML Day 2014 can be ordered, as we are out of stock! Since three weeks, a total of 35.000 buttons of "World CML Day" are travelling all across the world, and some of them are still on their way! Thanks to you all for your orders! We look forward to receiving your pictures!

World CML Day on 22 September is approaching... Pins are travelling!

WCMLD-PinsAbout 35.000 buttons of "World CML Day" are travelling these days across the world, to be with CML advocacy organisations and healthcare professionals on 22 Sept (9/22). This photo shows the different options we looked at: the one on the bottom left is the magnetic button produced this year, the little one in the middle is our 2013 pin (the bigger ones were samples we also tested)! Excited to see the photos when people all around the world will wear the pins on 22 September!

To our member organisations - see our news here how to get the pins and books, if you have not ordered them already!

Now also in Spanish: CML patients' declaration on quality and consistency in use of generics

An important topic of increasing attention discussed between CML patients and health professionals is the introduction of generics in CML treatment. Patients welcome that generics may improve patient access to more affordable therapies in many countries. However, patients also raise concerns about impact on their cancer when switched between different products for non-medical reasons, if their equivalence in terms of quality and efficacy is uncertain.

In May 2014, CML patient groups published a declaration calling governments, health authorities and healthcare professionals to minimize potential uncertainties and risks for patients with five measures. Thanks to our friends at Fundación Colombiana de Leucemia y Linfoma and the Max Foundation, a Spanish translation of the declaration is now available. See also our Generics knowledge base which is continuously updated.

Getting ready for World CML Day 2014!

WCMLD 2013 0922Group by group, advocate by advocate, and survivor by survivor, World CML Day is raising awareness about the needs of people living with CML around the world through numerous simultaneous events being organized by leukemia patient associations on all continents on 22nd of September. Visit our World CML Day Section on this website to learn more about World CML Day about key initiatives planned for this year´s Sept 22! From today, you can also place your orders for our International CML Book („Faces of courage and hope --
16 inspirational journeys of people living with Chronic Myeloid Leukaemia“) and the new "World CML Day magnetic pins". We look forward to a wonderful World CML Day 2014 and everybody´s active contribution!

The CML Advocates Network welcomes its newest member: now 90 patient organisations from of 68 countries in the CML Advocates Network

CML Advocates Network-logo-rectangleWe are delighted to welcome our newest member: "CanSurvive" from Egypt! CanSurvive is the first Egyptian member of the CML Advocates Network. From today, the Network connects 90 organisations from 68 countries across all continents. See the list of CML groups in the Network on our world map.

CML Horizons 2014 photos available now... conference report coming soon!

CML-Landscape-Belgrade-2014-1The top 400 pictures taken during CML Horizons 2014, the global meeting of CML patient advocacy groups, are now available!

You will find all photos in our CML Horizons 2014 Photo Gallery. If you wish to see photos of previous conferences and events, please visit the CML Advocates Network Gallery (member only area!).

The conference report will follow soon, so check back again!

And now: enjoy some impressions of a great conference!

Inofficial CML trial registry updated

Our inofficial CML trials registry has been updated with new CML studies, e.g. with Nivolumab and Ruxolitinib. See http://www.cmladvocates.net/cmltrials. Do you know of any study that is not yet listed in our inofficial registry? Please let us know using the form on cmladvocates.net!

EHA 2014: Patient Advocacy Programme

ehaJust some more days until the European Hematology Association's annual congress opens its doors in Milan. We are excited to see many of you at EHA 2014!

Over the past months, we've been working hard with the EHA team to set up an attractive patient advocacy programme during the congress, on having a joint booth of all European patient advocacy organisations, and - for the first time this year - also having a one-hour meeting of all patient advocates during the congress. Up to 50 free congress registrations were offered to patient advocates, so we hope there will be strong patient attendance!

In a nutshell, this is what is offered specifically for advocates this year:

  • EHA Patient Advocacy Booth (booth #206) as a central meeting place of all patient advocates and their peers
  • Patient Advocates Meeting (FRI 11:30-12:30, Room Yellow), meeting for all patient advocates in order to strengthen collaboration and links between our patient advocacy groups
  • Patient Advocacy Session "Generics in Haematology: The doctors’ and patients’ perspective" (Sat 8:00-9:15, Room Amber 5+6 SW 2)
  • Patient Advocacy Session "The challenges of young patients with old people's diseases" (Sat 9:30-10:15, Room Amber 5+6 SW 2)
  • ESH-EHA Joint Symposium "What do you mean, he can’t have the treatment? An interactive session for haematologists and patients" (Sat 11:45-12:45, Amber 5+6 SW2)
  • EHA-ASH Joint Symposium "Access to medicines and fair pricing: The cost of innovative drugs" (Sat 14 June, 13:15-14:15, Room Silver, NW 2)
  • EHA Advocacy Session "The Future of Hematological Research in Europe" (Sat 14 June, 16:15-17:30, Room Amber 5+6, SW 2)

Find a detailed document describing the patient advocacy programme at EHA 2014 here.

If you are coming to EHA,don't miss any of them, I think they will all be really interesting!

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