Family Meeting of the German Parents' Organisation for Children with CML
From 31.05.-02.06.2019 the members of the Parents' Organisation for Children with CML e.V. met in Dortmund, Germany. 20 families followed the invitation of the first chairman Ullrich Duckstein and his wife. For many of them, it was a reunion but for 3 families it was the first personal contact with other affected parents after CML diagnosis of their child.
Our dear Cornelia Borowczak, a very active member of this organization, mother of a CML patient as well as a member of our CML Community Advisory Board has shared with the global CML community the following information about CML and children. Don't miss these interesting updates on "Pediatric Chronic Myeloid Leukemia":
CML Horizons 2019 - Presentations, photo gallery and videos now available!
CML Advocacy: Learn. Share. Grow.
17 - 19 May 2019, Lisbon, Portugal
The 17th International CML Horizons Conference was held in Lisbon, Portugal from the 17th to 19th May 2019
This year we greeted a record 119 participants and welcomed 22 newcomers who all support the CML Community worldwide with a very active engagement in Social Media by sharing, making comments and networking in Facebook, Twitter and Instagram during the meeting.
Hundreds of posts on the Facebook Pages of the CML patient advocates and groups were informing thousands of people worldwide and more than 300 Tweets using the hashtag #CMLHZ19 got a large impact on the online CML community with more than 11.000 impressions on this social media channel.
Our participants were given the opportunity to hear from 21 speakers from both medical and patient advocate specialists.
In addition to the expert presentations from our acclaimed speakers our participants once again through the interactive regional workshops collectively played a role in strengthening the regions.
The conference also offers cross border networking where delegates were able to share best practices, interact and exchange ideas.
The poster session has become extremely popular and 21 advocates showcased their organisations' activities.
Read more to access to the Presentations, Video Streams and Photo Gallery of the CML Horizons 2019 Conference.
€ 20,000 donated to the CML Advocates Network during the EHA 2019 Congress!
The World CML Day
CML results from a transformation of a stem cell caused in about 95% of Chronic Myeloid Leukemia patients by the change of chromosomes 9 and 22, which is why World CML Day (9/22) carries a symbolic significance for the patient community.
This day was initiated in 2008 by the patient community to bring awareness about patients’ needs to the general public, politicians and medical professionals across the world.
To face this challenge, every 22 September the entire Chronic Myeloid Leukemia community stands together to raise awareness about one life-changing reality – living with CML.
The CML Advocates Network annually coordinates the World CML Day global awareness campaign to support our 122 members worldwide.
Welcome to EHA 2019 in Amsterdam, The Netherlands
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.
Welcome, Patients with chronic myeloid leukemia in Kyrgyzstan!
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.
Apply for an EHA 2019 Fellowship until 9th April
The European Hematology Association (EHA) has already opened the Fellowship Application and Registration process by providing 60 free congress registrations for leaders of hematology patient organisations. This year, EHA has increased their fellowship and is offering an additional 10 fellowships, to provide patient advocates the opportunity to attend the 24th annual EHA congress which is taking place in Amsterdam from June 13-16, 2019.
If you are a representative of a CML patient organisation interested in attending this Congress, you have the possibility to apply for an EHA Fellowship and attend the 24th EHA Congress HERE.
Welcome, ASUL, Uruguay!
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.
CML Advocates Network with the Rare Disease Day 2019
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.
UPDATE: Falsified Iclusig traded globally, discovered in Malaysia (new), Turkey, Switzerland, Argentina and Internet sales with UK/Ireland product batch numbers PR072875 (45mg) and 25A19E09 (15mg)
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 lot/batch numbers
- PR072875 (UK/Ireland pack, English language, 60 tablets á 45mg, Expiry date 12/2019) and
- 25A19E09 (UK/Ireland pack, English language, 30 tablets á 15mg, Expiry date 10/2020).
In addition, on 20 February 2019, we were notified of a new falsified Iclusig pack:
- PR0834170 (German pack, German language, 30 tablets á 45 mg, Expiry date 06/2020).
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. The WHO page has not yet been updated on the third falsified pack, which is expected those days.
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 in languages from those countries and with these languages. Products with the above batch numbers, country and 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. In case of 25A19E09 and PR0834170, no original products were manufactured wih those batch numbers.
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.
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.
Important Notice: Changes to the CML Horizons 2019 Conference
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
Falsified Iclusig traded globally, discovered in Turkey, Switzerland, Argentina and Internet sales with UK/Ireland product batch numbers PR072875 (45mg) and 25A19E09 (15mg)
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.
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.
Emerging news regarding CML Horizons 2019
Emerging news regarding CML Horizons 2019
Dear members and friends of the CML Advocates Network,
You are probably aware of the terrible attack that took place yesterday by terrorists in the Dusit hotel in Nairobi.
These are terrible and sad news indeed. Our thoughts are with the lost innocent victims and their families. We live in a crazy world with crazy people. Terror is taking lives in almost every country and it is so difficult to understand and accept. We must not react rashly, and will not make a decision based on emotion, but rather consider the alternatives and then make a decision.
The steering committee will now study the facts and the extent of the sad event and will discuss the implications of CML Horizons in Nairobi in May.
Meanwhile, we are not stopping registration as we already have more than 20 delegates registered, but we are stopping any activity that increases our costs and commitment like we will not book more flights until the Steering committee discusses the issue and makes a decision.
We are in constant touch with our local member organization, Henzo Kenya, and with our logistics agency Safari Trails to better understand the Situation in Nairobi and all safety steps taken now and in the near future.
We are evaluating the situation and we will come back to our members with more information and the final decision as soon as possible within 2 weeks.
We must decide what is best for Horizons and for all our members and delegates. We will put the safety of our participants at the top of our priority.
It is a sad day.
With our hopes for a better future
Giora and all the CML Advocates Network steering committee members.
