Our CMLCAB Abstract published in the OJRD Supplement
Orphanet Journal of Rare Diseases (OJRD), which is the official journal of Orphanet, the portal for rare diseases and orphan drugs, has recently published a special supplement featuring over 50 selected poster and speaker presentation abstracts from the 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020).
This journal, published by BioMed Central, is an open access online journal focused on rare diseases and orphan products and publishes high-quality reviews on specific topics.
Our Abstract "CML Advocates Network implementation of the Community Advisory Board (CAB) model" has been included as part of this collection as P28 (page 17).
See the OJRD Supplement: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020). Orphanet J Rare Dis 15, 310 (2020). https://doi.org/10.1186/s13023-020-01550-1
Download the PDF by clicking on the image below:
Welcome, UDON CML Patients Group from Thailand!
We hereby proudly welcome a new member organisation in the CML Advocates Network:
UDON CML Patients Group, based in Thailand.
In Memoriam of Stanislav Kulikov
It is with great sadness that we share that our friend, colleague, and CML patient advocate Stanislav Petrovich Kulikov passed away on 18th December 2020, due to a sudden illness.
CML Advocates Network loses a friend who was also a very active patient advocate, leading the Sodeystvie (Assistance) patient’s organisation as Vice-President in the Volga Federal District and always strongly supporting the network’s initiatives and projects.
Stanislav was a very special, helpful person and a passionate advocate. In words of our colleague Irina from the Patient Foundation "Drop of Blood” in Ukraine, “Stan was the best friend to patients from Ukraine. He was the best fighter for the rights of patients in Russia, broughting good and light to people living with blood cancer in the region. We will always miss him. Thank you, Stan, for all the warmth and kindness.”
He never rested from advocating for leukemia patients and trying to improve diagnosis, access, and quality of life for CML patients in Russia and its neighboring countries. He participated in over ten CML Horizons International Conferences, actively collaborating in many different activities of the global network as the World CML Day or the TFR for CML patient’s research.
“All of us will remember Stan as the happiest friend, who restlessly dedicated his time to improve the quality of our lives and make this world a little bit better with humility and kindness”, Dražen Vincek from Croatia stated.
We owe Stanislav a lot, not only for all that he has done for the CML Advocates Network and for Russian patients but also for being a dear friend and a great advocate. We will miss him very much, and we wish his family and all friends all the strength and wisdom they need in these difficult times. Rest in peace, dear Stanislav.
- The CML Advocates Network Steering Committee on behalf of the CML advocates global community -
ELN Recommendations 2020
The therapeutic landscape of CML has profoundly changed over the past 7 years so the European Leukemia Net convened an expert panel to critically evaluate the current evidence and update its previous recommendations.
The new "European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia" were published in March 2020 in the prestigious journal Leukemia.
In order to improve the information available to patients and support them to access these guidelines, we have developed once more a patient-friendly summary of recommendations for CML management based on the ELN Recommendations 2020.
It is made available at this stage in 15 languages and more are coming. We are welcome to initiate community translations by member organisations of CML Advocates Network under the provision that members have them co-validated by a local CML specialist with whom the member organisation regularly works. If you would like to help us making the summary available in your language, please, contact us at info@cmladvocates.net.
This is a result of a genuinely patient-led project and aims to help patients to better understand CML management and communicate with their doctors on treatment and diagnostics.
Download the Patient-friendly Summary of the ELN 2020 CML Treatment Recommendations
CML Atlas East Europe
CML Atlas East Europe is the final product of East Europe and West Asia regional project run by CML Advocates Network from 1st December 2019 to 31st March 2020.
The activity started with a regional survey reaching our Eastern European patient members addressing a sample of respondents of CML advocates and CML doctors based in 19 countries from the Central and Eastern EU region.
An online questionnaire was created by using cloud-based online survey development software to collect data on general information about CML, availability of TKIs, availability of PCR, running clinical trials and treatment-free remission data.
Results of this collection have been published on a website http://ceeatlas.cmladvocates.net where we can navigate through the menu section and be informed about key topics and issues in the different countries.
ASH 2020 Virtual Conference
Originally to be held in San Diego, California, the 62nd ASH Annual Meeting and Exposition organised by the American Society of Hematology will be presented as an all-virtual event on December 5-8, 2020, given the continuing threat of the COVID-19 pandemic.
This year we will be attending this important meeting for the CML patient advocacy community for an invaluable educational experience and the opportunity to review many scientific abstracts highlighting updates on chronic myeloid leukemia.
We have prepared a selection of the most critical presentations on CML to be followed by the CML patient advocates. Please, note all times listed are in Pacific Time (PST):
