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." 

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 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 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 

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.

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 -