Welcome to the CML Advocates Network!
We are a worldwide network of non-profit organisations supporting patients with Chronic Myeloid Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, running joint campaigns, and educating advocates how to build and grow patient organisations. The network is run by volunteers who are CML patients.
About 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!
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.
Group 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 pediatric CML steering committee of the international BFM group (I-BFM) has recently published the guidelines for treatment and management of pediatric CML in the British Journal of Haematology. The authors are pediatric experts from from United Kingdom, France, Italy, Netherlands, Belgium, and Germany. These guidelines will contribute to harmonisation of treatment of children and adolescents with CML. See our "Junior CML Advocates" section" on cmladvocates, specifically the section "Scientific Publications" where the full text is available for download.
The conference report will follow soon, so check back again!
And now: enjoy some impressions of a great conference!
Just 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!
Chronic Myeloid Leukemia patients call for quality and consistency when generics are introduced to treat their cancer
On 2-4 May 2014, patient organisations from 58 countries supporting patients and families affected by Chronic Myeloid Leukemia (CML) met in Serbia to learn from medical experts, share best practice in patient advocacy and grow their organisation's capacity. An important topic of increasing attention discussed between patients and health professionals was 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 these products’ equivalence in terms of quality and efficacy is uncertain.
The faculty included Neil Shah (USA), Qian Jiang (China), Andrija Bogdanovic (SR), Giuseppe Saglio (IT), Susanne Saussele (DE), Sarah Liptrott (IT), Yoseph Caraco (IL), Tamás Beretzky (HU), Martin Godfrey (UK), Annette Freidank (DE), and many more - as well as a keynote by Dr. Brian Druker!
The presentations covered highly relevant topics like updates from CML research, discussions around CML generics, information about drug interactions and pharmacology, issues around sexuality and self-esteem, the use of social media in advocacy, building a patient advocacy strategy, and reports from the key challenges in CML care in the five world regions.
The CML Advocates Network welcomes two new members: now 89 patient organisations from of 67 countries in the CML Advocates Network
We are delighted to welcome "DANCE WITH CANCER" (Turkey) and "FUNDACIÓN COLOMBIANA DE LEUCEMIA Y LINFOMA, FCL" (Colombia) as new members of the CML Advocates Network. The network now connects 89 organisations from 67 countries across all continents. See the list of CML groups in the Network on our world map.
CML Horizons 2014, the 12th annual international conference for organizations representing people with CML was held from 2 to 4 May 2014 in Belgrade, Serbia. We were thrilled to have 119 delegates from 58 countries attending this year´s conference. Please share the links in your communities! Very soon we will also share the webstreams and photos of the conference. are available now!