Report from the first European Hematology Community Advisory Board (Hem-CAB) on 18 June 2018 in Stockholm, Sweden
The European hematology patient community held its first hematology community advisory board (HEM-CAB) meeting in Stockholm on 18 June 2018. The hematology patient community is a very well-connected patient community in the area of rare diseases and oncology, with 12 pan-European patient umbrella organisations, including the CML Advocates Network, that have a network of over 250 member organisations that provide information for patients and carers, engage in EU and national policy and engage in research, development and regulatory affairs.
As an immediate follow-up action from the European Hematology Association (EHA) Congress, the first Hem-CAB meeting brought together leaders from the 12 pan-European umbrella patient organisations and representatives of eight pharmaceutical companies working in hematology. The CML Advocates Network was represented by Sarunas Narbutas and Jan Geissler.
The 8-hour Hem-CAB meeting was preceded by a 3-hour training session, preparing patient advocates about the structure and purposes of the meeting. While the meeting was held under confidentiality terms from all parties to allow for an open and frank discussion, key findings and action points are summarized in this report.
Welcome, Association Fanomezana LMC! Now 119 patient organisations from 89 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Association Fanomezana LMC, based in Madagascar. The CML Advocates Network now totals 119 member organisations in 89 countries worldwide! See the list of CML groups in the Network on our world map.
TFR 4 CML patients survey is closed!
The TFR for CML patients survey is now closed!
The CML Advocates Network launched the online global survey “TFR 4 CML Patients”, available in eleven languages (English, Spanish, German, Italian, French, Finnish, Hebrew, Arabic, Danish, Japanese and Russian) to measure the viewpoints, needs and experiences of CML patients that are considering or have already started Treatment Free Remission (TFR). From March to July 2018, the survey has collected the feedback of more than one thousand CML patients worldwide.
The findings of the survey will help us to better understand what the concerns, challenges and motivations are during the decision phase, the first probation phase after stopping, and when attempting TFR has either worked or failed.
Now, we start working on the analysis of the results of the treatment-free remission survey to provide the CML global community with a powerful evidence-based patient advocacy tool. Stay tuned for more information about #TFR4CML!
Webinar: Getting the most out of EHA 2018
The European Hematology Association's annual congress will start in Stockholm, Sweden, this week and we would like to support all CML patient advocates who will be attending with us this amazing meeting.
Our co-founder and member of the EHA European Affairs Committee, Jan Geissler, on behalf of the EuroBloodNET ePAG, presents this webinar on how to get the most of EHA as a CML patient advocate.
Through the webinar, you will be able to know more about topics like:
- Types of sessions at EHA and their relevance for a CML patient advocate
- How to set your priorities attending this huge congress.
- How to find and engage with key opinion leaders at the EHA Posters Sessions.
- More about EHA Abstracts: how to find them and how to read them.
You can also find a selection of clinical and translational research abstracts, oral presentations and posters focused on Chronic Myeloid Leukemia. Please, click on the following links to check out the interesting information for CML patient advocates attending #EHA23:
To know more about the relevant sessions and meetings for patient advocates at #EHA23, the Patient Advocacy Track, the Patient Advocacy Capacity Building Meeting, the Programme at a glance and many more, please visit our webpage EHA 2018 in Stockholm: Patient Advocacy Programme.
Don't forget to share the webinar with your contacts and see you soon in Stockholm, dear CML advocates!
World CML Day 2018
2018 World CML Day
"Today, Together.
Improving access."
“We see people dying of CML even though it's a well-understood, biologically well-understood, a well-treatable disease with five different therapies on the market. But if you can't access testing, if you can't access the drugs, people are still dying from the disease. And so access is a big issue. It's probably the biggest barrier that we have.”
- Jan Geissler. Co-founder of the CML Advocates Network –
Every year in 22nd September the CML global community lead by the CML patient Advocates holds the World CML Day. In 2017 more than 60 CML patient associations, members of the CML Advocates Network, support the awareness campaign “Today, together” and celebrate their courage and achievements! World CML Day 2017 Report
Know more about what we are planning for the World CML Day 2018 and be ready to be part of the worldwide awareness with "Today, together. Improving access."
EHA 2018 in Stockholm, Sweden: Patient Advocacy Programme
Just two weeks left until the European Hematology Association's annual congress starts in Stockholm, Sweden. Many patients of the hematology community and 17 CML patient advocates will be attending this impressive meeting from June 14-17, 2018 within more than 10.000 hematologists from all over the world.
Over the past months, the Hematology ePAG Project Management Office, coordinated by Nicole and Jan, has been working very closely with the EHA Congress office in order to make this year´s congress a success again.
Back by popular demand again this year, we have a joint patient advocates booth of all European patient advocacy organisations as well as “Patient Advocacy Track” session within the scientific program during the Congress. Up to 50 free congress registrations were offered to patient advocates (including 17 advocates interested in CML), so we hope there will be strong patient attendance!
Click "Read more" to see what has been offered specifically for patient advocates, haematologists and other stakeholders at #EHA23 this year.
