EHA 2019 Highlights: The CML patient advocates perspective
More than 12,000 hematology professionals from around the world met together in Amsterdam, The Netherlands for the 24th European Hematology Association (EHA) Congress.
This has been the largest EHA Congress ever recorded with a growth of more than a thousand attendees from last year.
Once again, our CML patient advocates team has been participating in this important meeting for leukemia patients as well as for the patient advocacy community.
Our co-founders Jan Geissler, Giora Sharf and Jana Pelouchova as well as our Chair Sarunas Narbutas and several Steering Committee members and CML CAB members as Zack Pemberton-Whiteley or Felice Bombaci, plus our staff members, have been attending and actively participating in many sessions of the Congress.
Know more about what happened at #EHA24 on CML:
CML Advocates Network appoints Denis Costello as its first ever Executive Director.
We’re proud to announce that Denis Costello has recently been appointed as the first Executive Director of the CML Advocates Network, the global umbrella organisation dedicated to empowering patient leaders in Chronic Myeloid Leukemia (CML).
Denis comes to our CML family from EURORDIS, Rare Diseases Europe, where he worked since 2008 as the organisation’s Online Communications Manager.
During that time he has led the launch and operation of RareConnect, a global, multilingual social network for patients and families living with rare diseases (see www.rareconnect.org) which saw him work with over 1000 patient organisations of all sizes and from all over the world who now use the platform to host their online patient communities.
European Society of Medical Oncology Congress, Barcelona, 2019
From 27th September to 1st October, the European Society for Medical Oncology Congress takes place in Barcelona.
The ESMO Congress is the appointment in Europe for clinicians, researchers, patient advocates, journalists and the pharmaceutical industry from all over the world to get together, learn about the latest advances in oncology and translate science into better cancer patient care.
Approximately 30.000 oncology professionals from all around the world will be able to do more for their patients.
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!
World CML Day 2019
2019
World CML Day
"Today, together,
for a CML free world."
Every year in 22nd September the CML global community lead by the CML patient Advocates holds the World CML Day. 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukemia (CML).
Since 2011, the worldwide community unites to celebrate "World CML Day" on September 22 (9/22). This date has been chosen for global and local CML awareness activities adding symbolic significance to the events, projects and campaigns.
CML patient advocates are together focused on raising awareness of the needs of patients living with Chronic Myeloid Leukemia.
Know more about what we are planning for the World CML Day 2019 and be ready to be part of the worldwide awareness with "Today, together. For a CML free world."
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.
