CML Advocates Network

For Chronic Myeloid Leukemia Patient Group Advocates

The Network

Advocacy & Knowledge

Two new animated patient videos: Carin´s & Michelly´s story are now available!

Last Updated: Wednesday, 08 June 2016 07:12 | Print

In September 2014, the CML Advocates Network published the international CML Book "Faces of Courage and Hope" an English-language book that illustrates the life of 16 CML patients from 15 countries. The book features wonderful photos and moving interviews. Selected patient stories are now also available in form of animated videos! The animated stories bring to life the emotional impact of CML on patients and their friends and family, in addition to their future hopes and aspirations. Two new story are now available in form of animated videos:

Living with CML: Carin´s story of courage and hope (English / Swedish)
Living with CML: Michelly´s story of courage and hope (English / Portuguese)

Here you will find other videos available to date:

Living with CML: Bert´s story of courage and hope (English)
Living with CML: Mina´s story of courage and hope (English / French)
Living with CML: David´s story of courage and hope (English)

Welcome, "K.E.F.I. of Athens"! Now 103 patient organisations from 79 countries in the CML Advocates Network

Last Updated: Thursday, 24 September 2015 14:07 | Print

We hereby proudly welcome a new member to our network: "K.E.F.I. of Athens" Association of Cancer Patients of Athens, based in Greece. The CML Advocates Network now counts a total of 103 member organisations in 79 countries worldwide! See the list of CML groups in the Network on our world map.

Today is World CML Day - 9/22!

Last Updated: Tuesday, 22 September 2015 08:20 | Print

TODAY IS WORLD CML DAY!

One day, one community, one life changing reality… Today, we are together to make a status, share and involve on our needs!

Screenshot CML Today 1 Screenshot CML Today 2 Today on World CML Day, the CML Advocates Network is launching its brand-new mobile CML ADHERENCE APP “CML Today” for CML patients to support adherence to TKIs as well as to track their PCR results.

The mobile app is available for free in English, French, Spanish, German, Portuguese, Arabic, Hebrew, and more languages will follow soon.

Find „CML Today“ in 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 being carried out all over the world on World CML Day 2015 and the campaign materials developed by members of the CML Advocates Network.

More information on World CML Day 2015 can be found here.

The CML Advocates Network wishes everybody an inspiring and successful World CML Day 2015!

wcmld15 key-audiences

CMLadvocates.net goes mobile, now optimized for smartphones

Last Updated: Thursday, 17 September 2015 09:34 | Print

cmladvocates-mobile-screenshot On World CML Day on 22 September, the CML Advocates' Network will launch a mobile app for CML patients to support adherence to TKIs as well as to track their lab results.

In order to make all our information available more conveniently wherever you are, the cmladvocates.net website is now also smartphone-ready. All information on cmladvocates.net, e.g. the news on the homepage, are now optimized for small screens when accessed from mobile phones.

Getting ready for World CML Day 2015 on Sept 22

Last Updated: Friday, 04 September 2015 20:48 | Print

WCMLD 2013 0922 Logo Today Together ... is the motto for this year´s World CML Day campaign! One day, one community, one life changing reality… Today, we are together to make a status, share and involve on our needs!

To help our members spread the message of awarenss and strenghten their voice, this year the CML Advocates Network is providing a World CML Day "Toolkit" that includes adaptable artwork for print and online use (posters & flyers), a photo-database, a press release and communication guidelines containing valuable strategies and hints for how to get the most out of the campaigns. Visit our World CML Day Section on this website to learn more about World CML Day, about this year´s campaign and about key initiatives planned and campaign materials prepared by our members for this Sept 22. Wishing you all an inspiring and successful World CML Day 2015!

wcmld15 key-audiences

Welcome, CFР «DROP BLOOD» (Ukraine)! Now 102 patient organisations from 78 countries in the CML Advocates Network

Last Updated: Thursday, 20 August 2015 09:43 | Print

We hereby proudly welcome a new member to our network: CFР «DROP BLOOD», based in Ukraine. The CML Advocates Network now counts a total of 102 member organisations in 78 countries worldwide! See the list of CML groups in the Network on our world map.

Now available: David´s story in form of animated video

Last Updated: Thursday, 22 October 2015 08:08 | Print

Living with CML: David´s story of courage and hope (English)

Patient-friendly summary of the ELN CML Treatment Recommendations now also in Azerbaijani language - and 16 other languages

Last Updated: Thursday, 16 July 2015 08:00 | Print

ELN2013summary-cover The 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 17 languages: English, Arabic, Azerbaijani, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Serbian, Spanish and Turkish (new: Azerbaijani, a big thank you to Mehriban Bagirova from the Charter of Figthing of Leukemia Public Union Azerbaijan).

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

CML Advocates Network e-mail Newsletter of July 2015 published

Last Updated: Friday, 10 July 2015 07:54 | Print

The July 2015 edition of our e-mail newsletter provides updates about the following recent projects and activities within the CML Advocates Network:

EHA 2015 congress in June 2015 in Vienna/Austria: patient advocacy a central topic in the scientific programme
Call for volunteers: test phase for our CML adherence app starting soon. Technically-adept and less experienced users wanted!
CML Horizons 2015: visit our photo gallery!
"Junior CML Advocates" section on cmladvocates.net - new design, new content
"What´s in the news?": share newspaper articles and reports related to generics and copy drugs!

Two must-reads: CancerWorld articles on "Side effects of target treatments" and "Generic cancer drugs"

Read our CML Advocates Network Newsletter, July 2015 edition, here.
Find our archive of earlier newsletters here.
Subscribe to our E-Mail newsletter here.

Patient advocacy at the EHA 2015 congress in June 2015 in Vienna/Austria: presentations now available!

Last Updated: Sunday, 06 December 2015 22:01 | Print

EHA2015 congress-center From 11-14 June 2015, the European Hematology Association's (EHA) Annual Congress opened its doors in Vienna, Austria. Again this year, the CML Advocates Network has been working closely with EHA to provide patient advocates with free congress registrations and exhibition booths. 48 patient advocates from 37 hematological patient organizations attended the congress. Patient advocates are recognized by EHA as competent and reliable partners.

Patient Advocacy sessions were again an integral part of EHA's annual congress program! PDFs of all three patient advocacy sessions are now available. Click on the respective presentation to download the slides.

New sub-section: Compilation of newspaper articles and reports on CML generics and copy drugs

Last Updated: Sunday, 28 June 2015 18:53 | Print

We are pleased to announce the launch of a new sub-section on our website: The menue item "What´s in the news?", a sub-section of our "CML Generics" section, contains newspaper articles and reports related to generics and copy drugs in CML. This sub-section "lives" only if you make it grow! So please share all interesting and relevant articles that you come across with us! Please see the current list of articles here and share all articles related to CML generics and copy drugs that you come across!

Now available: Mina´s story in French language

Last Updated: Thursday, 17 September 2015 09:18 | Print

In September 2014, the CML Advocates Network published the international CML Book "Faces of Courage and Hope" an English-language book that illustrates the life of 16 CML patients from 15 countries.

Mina´s story is now also available in French language. See here: "Living with CML: Mina´s story of courage and hope" (French)

Here are all other currently available videos:

Living with CML: Bert´s story of courage and hope (English)
Living with CML: Mina´s story of courage and hope (English)

Please donate!

Accelerated Phase

A phase of development of Chronic Myeloid Leukemia between chronic and blast phase. Untreated, the accelerated phase progresses to blast phase within a few months.

Chronic phase

The earliest phase of CML development.

Hematologist

A physician who has specialized in blood diseases, including leukemia ("heme" means "blood" in Greek language)

Side effect

Adverse effects of a treatment:, side effects limit the maximum tolerable dose in particular during chemotherapy.

Copy drug

A medicine provided by third party manufacturers despite the medicine is still patented

Bosutinib

Bosutinib (development name SKI-606, trade name Bosulif), a second generation tyrosine kinase inhibitor.

Also called Bosulif|SKI-606|SKI606

Cytopenia

The condition of having a deficient number of one or more elements in the blood. Depending on which types of blood cells are decreased, the condition is also called leuko(cyto)penia, granulopenia, lympho(cyto)penia, mono(cyto)penia, erythro(cyto)penia or thrombo(cyto)penia.

Dasatinib

Trade name: Sprycel, development name: BMS-354825, inhibits BCR-ABL and SRC tyrosine kinases. Authorized for marketing in the EU since 2006 for the treatment of CML and Ph+ALL.
Other names: BMS-354825|BMS354825|Sprycel

Nilotinib

Trade name: Tasigna, development name: AMN107, inhibits BCR-ABL tyrosine kinase. Authorized for marketing in the EU since 2007 for the treatment of CML and Ph+ALL.
Other names: |AMN107|Tasigna

Ponatinib

Trade name: Iclusig, development name: AP24534; a third-generation tyrosine kinase inhibitor
Other names: AP24534|Iclusig.

Generics

A class of medicinal products where the drug is comparable to a branded product in dosage form, strength, route of administration, quality and efficacy, and intended use. A generic drug can only be marketed after patent exclusivity protection ends.

Imatinib

Imatinib, trade name Glivec/Gleevec, development name STI-571, a first-generation BCR-ABL tyrosine kinase inhibition. Authorized for marketing since 2002 for the treatment of CML and Ph-positive ALL.
Other names: Gleevec|Glivec

Chronic

Long-lasting, slowly developping

Blast

An immature white blood cell that normally represents an early phase of the development process of a blood stem cell in the bone marrow

TKIs

Tyrosine Kinase Inhibitors, a class of drugs that block an enzyme involved in the mechanism of division of cells

ECOG

Eastern Cooperative Oncology Group Index to classify the quality of life of cancer patients on a scale ranging from 0 (fully active, able to carry on all predisease activities without restriction) to 5 (death).

Also often referred to as ECOG performance status.

Gene

A unit of information present as DNA; a gene usually contains the blueprint for a protein.

CML

Chronic Myeloid Leukemia, also called Chronic Myelogenous Leukemia
A chronic disease of the blood and bone marrow that results from a transformation of a stem cell.

PCR

Polymerase Chain Reaction, a very sensitive diagnostic test that allows the detection of certain genes (DNA) on a very sensitive level. PCR can detect up to one single gene in about 1 million genes.

CHR

Abbreviation for Complete Hematologic Response. The blood cell count has returned to normal, and tests don’t show any immature white blood cells. Also, the spleen has returned to a normal size if it was enlarged.

CAM

Complementary and Alternative Medicine