The CML Advocates Network welcomes its newest member: now 90 patient organisations from of 68 countries in the CML Advocates Network
We 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!
The 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
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
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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. |
CML Horizons 2014 webstreams of all presentations now available!
Webstreams of all presentations held at CML Horizons 2014, the global meeting of CML patient advocacy groups, are now available.
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.
Go to our CML Horizons 2014 page to listen to the presentations!
