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.
CML Advocates Network with the Rare Disease Day 2018
Chronic Myeloid Leukemia is a Rare Disease
What is a Rare Disease?
The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition. In Europe and many other regions, a disease is defined as rare when it affects fewer than 1 in 2000. One rare disease may affect only a handful of patients in the European Union and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.
CML Advocates Network participating at EHA-SWG 2018 Meeting
The European Hematology Association held the “EHA-SWG Scientific Meeting on Integrated Diagnosis Strategies in Oncohematology for the Management of Cytopenias and Leukocytosis” on February 8-10, 2018 In Barcelona, Spain.
The scientific meeting covered all practical aspects of diagnosis of haematological disorders suspected when encountering leukocytosis or cytopenia, with a strong focus on morphology, pathology and flow cytometry.
During three days, the hematological experts put under the spotlight very interesting topics as the following: Pre analytical and analytical considerations; Towards integrated diagnoses: basics of morphology, flow cytometry, cytogenetics and molecular karyotype, molecular technologies; Morphology of granulo-monocytopoiesis: normal, MDS, AML and MPN; Lymphopoiesis, leukemia and lymphoproliferative disorders; New drugs / therapeutic approaches and personalized medicine or Patient’s follow up: MRD and detection of the emergence of resistances.
ASH 2017- personal report, impressions and summary
- Written by Sharf Giora, CML Advocates Network -
ASH 2017 is the 10th ASH conference I am attending in a raw, and I am being asked many times why do I like this conference and travel such a long distance to attend it every year.
The main reason that I, as a patients representative, leave home and travel to ASH is to hear and learn about the last innovations in the treatment of blood cancers and bring these news to patients in my country and across the globe, to empower them with knowledge, and mainly hope. that research in the various diseases is ongoing and if they are in a need for a new treatment, maybe it is just around the corner. The second reason why I go to ASH, which is not less important, is that this is the best place and opportunity to meet in a short time all the stakeholders that I am working with, like Drs and scientists from Israel and the globe, Pharma representatives from medical and patients relations, and other patients advocates, and to discuss with all of them how to continue and strengthen our collaboration.
CML Horizons 2018 Registration Now Open - 4- 6 May 2018
Register here - Preliminary Program - Conference fee - Scholarship Application
- Call for Poster Presentation Abstracts - Travel - Visas - Venue & Accommodation - Acknowledgements
Registration is now open - Join us for the 16th “CML Horizons: Learn. Share. Grow" Conference
DATE: 4TH to 6th MAY 2018
LOCATION: WARSAW, POLAND
Equip yourself with knowledge on how to make a difference to the lives of patients, identify opportunities in patient support & advocacy, empower yourself & gain the courage to fight for the rights of CML patients, learn from the experts - both patient advocates and physicians.
This exciting one of its kind conference will enable you to be able to exchange ideas, interact & share best practice. You will also have the opportunity start networking across borders and build alliances and so much more for you to bring back to your own organization.
