We hereby proudly welcome a new member organisation in the CML Advocates Network:

FUNDALMC - Fundación para la Asistencia al Paciente con Leucemia Mieloide Crónica based in Venezuela.

We hereby proudly welcome two new member organisations in the CML Advocates Network:

Asociația Română de Cancere Rare/ Romanian Rare Cancers Association based in Romania and

HEMA-Association for support of patients and caregivers of Hematology diseases based in Macedonia.

The CML Advocates Network now counts a total of 125 member organisations in 93 countries worldwide! See the list of CML groups in the Network on our world map.

We are proud to welcome a new member organisation to the CML Advocates Network: Asociación Panameña de Pacientes y Parientes con Enfermedades Hematológicas APPPEH, based in Panama.

The CML Advocates Network now totals at 123 member organisations in 93 countries worldwide!

See the list of CML groups in the Network on our world map.

 Register here - Preliminary Program - Conference fee -  Scholarship Application

Call for Poster - Call for Nominations Travel - Visas - Venue & Accommodation - Acknowledgements  

Registration is now open - Join us for the 18th “CML Horizons: Learn. Share. Grow" Conference

DATE: 1st to 3rd MAY 2020 - LOCATION: San José, Costa Rica

For the first time, the 18th CML Horizons will be held outside of Europe and will take us to Central America in beautiful Costa Rica. 

On the World CML Day 2019, the CML Advocates Network is launching an online QUIZ aimed at educating patients, their relatives and society in general about chronic myeloid leukemia as well as at increasing awareness about this disease.

Click on The 9/22 Quiz, start playing and share your score on social media to join the World CML Day awareness campaign!

Today, together, for a CML free world...

... is the motto for this year´s World CML Day campaign, which will take place in two days, Sunday, Sept 22!

The World CML Day 2019 campaign: "Today, together, for a CML free world."

In order to help you spread the message of awareness and strengthen your voice, the CML Advocates Network has developed World CML Day 2019 materials to make this day global and unique.

Feel free to download, adapt and share the posters, flyers, images and videos on your face to face meetings, websites and social media channels. Let's go to raise awareness on Chronic Myeloid Leukemia all together! 

From June 13-16, 2019, the European Hematology Association holds the 24th EHA annual congress at RAI Amsterdam, The Netherlands. 

Address details RAI Amsterdam Europaplein 24, 1078 GZ Amsterdam, The Netherlands www.rai.nl/en

More than 10.000 hematologists coming from all over the world, patient organisations, patient advocates representing hematological diseases and other stakeholders will be attending this impressive meeting. Up to 60 free congress registrations were offered to patient advocates, including more than 20 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 #EHA24 this year.

Now 122 patient organisations from 92 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Patients with chronic myeloid leukemia in Kyrgyzstan.

The CML Advocates Network now totals at 122 member organisations in 92 countries worldwide!

Read more to see the list of CML groups in the Network on our world map.

Now 121 patient organisations from 91 countries in the CML Advocates Network

We are proud to welcome a new member organisation to the CML Advocates Network: Asociación Uruguaya de Leucemia ASUL,  based in Uruguay.

The CML Advocates Network now totals at 121 member organisations in 91 countries worldwide!

Read more to see the list of CML groups in the Network on our world map.

Chronic Myeloid Leukemia is a Rare Disease

What a Rare Disease is? 

According to the European Commission, any disease affecting fewer than 5 people in 10,000 in the EU is considered rare. Although this might appear small, it translates into approximately 246,000 people.

Most patients suffer from even rarer diseases affecting 1 person in 100,000 or more. Approximately 5,000-8,000 distinct rare diseases affect 6-8% of the EU population i.e. between 27 and 36 million people.

In the USA, a disease is defined as rare when it affects fewer than 200,000 Americans at any given time. 

The actual prevalence of rare diseases can vary between populations, making it difficult to provide a precise numerical definition

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases affect children.

Click here to check more information about Rare Diseases at Eurordis, Rare Diseases Europe.

Important Notice: Changes to the CML Horizons 2019 Conference                                                      

Dear Members & friends of CML Advocates Network,

This is a very important announcement and follows up from our notice a few weeks ago named "emerging news regarding CML Horizons 2019" following the tragic events that took place in Nairobi, Kenya.

After careful consideration, discussions and investigation the CML Steering committee has decided that at this point of time it is better for the safety of our members to change the location of CML Horizons 2019 and at such short notice we will need to come back to mainland Europe. Horizons will now be held in Lisbon, Portugal at the Lisbon Marriott Hotel, Avenida dos Combatentes 45, Lisbon 1600-042 Portugal and the dates still remain the same 17-19 May 2019.

This does not mean that in future years we will not take Horizons to another continent and we will work hard to try and make this happen for 2020 and we will keep you updated.

What does this change of location mean for all our members? We will need you to start registration ASAP and depending on the country you come from if you need a Schengen Visa this process can take 6-9 weeks so we need you to take the following steps.

Step 1: Register for CML Horizons 2019 here: https://www.cmladvocates.net/cmlhorizons

Step 2: At the following link is a list of the nationalities that must process a Visa: https://www.vistos.mne.pt/en/short-stay-visas-schengen/general-information/who-needs-a-visa#countries-2

Step 3: Once you have registered, we will be in contact with you in regards to support documents for your visa application.

For those members who have already registered: Vanja and Lidija will be in touch with you soon and there is NO NEED to re-register. For those who need a VISA we will need to send you new documents for a Schengen Visa to Portugal and new flight itinerary.

Finally, please note that this decision did not come easy and does not take away from why we had chosen Nairobi as our original destination and that is to honour our dearly departed Ferdinand Micho who was the leader in the fight of CML in Africa and the Middle East but also for the challenges that CML patients face in law and middle-income countries in access to treatment and monitoring.

We look forward to seeing you all soon and please should you have any questions at all please do not hesitate to contact us.

Warm Regards

Giora and Lidija on behalf of the CML Advocates Steering Committee
CML Advocates Network

The World Health Organisation (WHO) has issued a medical product alert today that falsified versions of ICLUSIG (Ponatinib) have been discovered in Turkey, Argentina and Switzerland, and in Internet sales. The falsified (counterfeit) medicines do not contain any of the CML drug ponatinib, but only low quantities of paracetamol. These falsified medicines are not going to have any effect against CML. The falsified English language packs contain the batch numbers

• PR072875 (UK/Ireland pack, English language, 60 tablets á 45mg, Expiry date 12/2019) and
• 25A19E09 (UK/Ireleand pack, English language, 30 tablets á 15mg, Expiry date 10/2020).

The WHO page which is available in English, French, Russian and Spanish provides photos of the packages and pill bottles so patients can find the batch numbers.

To identify falsified product batches both the batch number and packaging (language, country of the pack) are important.

No UK/Ireland ORIGINAL product has been produced by the manufacturers Incyte/Takeda that carries those batch numbers. - so products with the above two batch numbers in UK/Ireland and English language are most likely falsified. In case of PR072875, the counterfeiters used this genuine lot number originally issued on a German ICLUSIG box and created a falsified UK packaging.

And so far, the manufacturer and medicines authorities are NOT aware of additional FALSIFIED ponatinib products bearing different batch numbers, so patients taking Ponatinib with other batch numbers than those listed above should NOT yet be concerned.

WHO alert

Incyte Press Release

Patients, physicians and distributors should make sure to obtain CML medication from validated and reliable sources that are able to demonstrate the authenticity of origin of the products.

In case of any concern, check the batch number against the two identified falsifications, and contact Incyte Medical Information in case of persisting suspicion at or +800 00027423.

Please let the CML Advocates Network know via if you come across the falsified product with these batch numbers, so we know whether the falsified medicines have been shipped to any other regions or countries. National CML patient groups are also encouraged to notify their local health authorities and leading physicians.