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.
CML Horizons 2018 - Learn. Share. Grow: Presentations, Photo Gallery and Web streams now available!
CML Advocacy: Learn. Share. Grow.
4 - 6 May 2018, Warsaw, Poland
During the annual CML Horizons Conference on 4 to 6, May 2018 the CML Advocates Network welcomed 117 attendees (among them 41 newcomers) supporting patients and families affected by Chronic Myeloid Leukemia (CML) to Warsaw, Poland. Delegates from around the world (Europe, North America, Asia, Africa, Middle East and Latin America) came to Warsaw to learn from experts both medical and patient advocates on the latest information about CML, share best practices in patient advocacy in order to grow their organisations in their own countries and give back to their own communities. This year we had introduced the "Poster Presentation Session" that gave our members the opportunity to interact with other CML Patient Organisations and showcase their organisation on a worldwide platform and share their activities and/or best practices.
Our member Amal Hrim gave a heartbreaking moving tribute to our dearly beloved Ferdinand Mwangura and the community and members of the Africa & Middle East region have voted for Bahija Gouimi to act as temporary region steering committee until next elections.
The conference has over the years shown the immense energy and power of the worldwide CML Community: inspirational poster presentations, interactive regional workshop and outstanding and relevant presentations by CML medical and advocate specialists. The meeting doesn't simply give us just medical insight and advocacy expertise, but considerably more - we feel that throughout the years, the group has built up an extraordinary community crossing oceans and borders to improve the life of patients and empower new and existing patient groups and has turned into a remarkable universal family.
CML Horizons is a wholly community-run and multi-sponsored conference, which has evolved from the "New Horizons" conferences 2002-2011. The annual conference is run by the CML Advocates Network, hosted by the non-profit, Swiss-based and patient-driven "Leukemia Patient Advocates Foundation".
Presentations, Video streams and Photo Gallery are available now!
To view, all the presentations just Click on "PDF". Should you wish to translate selected presentation, please contact Lidija Pecova at l and request for the PowerPoint file. This will make it easier for you to translate the presentation into the language of your choice.
Please take note that the speakers have authorized CML Advocates Network to disburse the presentations in PDF format only on this site, however, it isn't permitted to transfer the PDF files elsewhere! If you would like to share the slides, kindly do this by connecting to this page or the documents on this site!
To view individual sessions, click on "Video Webstream" below.
Of course, you can reflect back on of the 16th CML Horizons Conference by viewing the photo gallery, HERE
The CML Clinical Trials data-base now lists 51 studies worldwide
The CML Advocates Network inofficial registry on clinical trials currently lists 51 studies:
- 28 CML studies currently recruiting patients
- 1 non-CML study also in the recruiting phase
- 22 studies that are no longer recruiting.
Check here CML Trials Registry
Welcome, Uzbekistan CML patients league! Now 118 patient organisations from 88 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Uzbekistan CML patients league based in Uzbekistan. The CML Advocates Network now totals at 118 member organisations in 88 countries worldwide! See the list of CML groups in the Network on our world map.
Ferdinand Mwangura Memorial
We pay tribute to our beloved friend and Steering Committee member
Ferdinand Mwangura
We are profoundly saddened at the passing of Ferdinand Mwangura, our friend and Steering Committee member. Ferdinand passed away in Kenya on 28th February 2018 at the age of 40.
Ferdinand was a young advocate and was well-loved and admired for his enduring commitment to work within CML Life Africa, a network of CML patient groups in Africa, Ferdinand was regarded as a leader, a mentor and a big brother to many.
In May of 2017, Ferdinand was voted in by his fellow patient advocates as the new steering committee member for CML Horizons representing Africa & Middle East region. He took this role on proudly and was a highly engaged member, always ready to provide advice and perspective on any issue.
He made particularly valuable contributions to the programme for 2018 CML Horizons. He also helped pioneer the network’s first global CML Community Advisory Boards, where he championed the voice and needs of CML patients from Africa.
- Ferdinand enjoying the rain in the Kenyan South Coast -
Free EHA congress registrations for CML patient organisations representatives: Deadline 27 February 2018!
Again this year, the European Hematology Association (EHA) is providing around 50 free congress registrations for leaders of hematology patient organisations, to give patient advocates the opportunity to attend the 23rd annual EHA congress which is taking place in Stockholm from June 14-17, 2018.
Welcome, Celebrando la Vida, Bolivia! Now 117 patient organisations from 87 countries in the CML Advocates Network
We are proud to welcome a new member organisation to the CML Advocates Network: Celebrando la Vida - Asociación de Lucha Contra la Leucemia, based in Bolivia. The CML Advocates Network now totals at 117 member organisations in 87 countries worldwide! See the list of CML groups in the Network on our world map.
