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 -
Welcome, FUNDALMC from Venezuela!
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.
Welcome, ARCRare from Romania and HEMA from Macedonia!
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.
Welcome, APPPEH, Panama! Now 123 patient organisations from 93 countries in the CML Advocates Network
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.
CML Horizons 2020 Registration Now Open
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.
Today is World CML Day 2019. Play and Learn, Share, Grow with us!
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!
World CML Day 2019 events are starting worldwide!
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!
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.
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.
