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. 

eha9This 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:

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CML Advocates Network appoints Denis Costello as its first ever Executive Director.

 

d low2.jpg.001.jpeg.001We’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.

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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.

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€ 20,000 donated to the CML Advocates Network during the EHA 2019 Congress!

wcmldlogoThe 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.

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RCE-ESO-ESMO training course for rare cancer patient advocates: Travel grants available

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Are you are Patient Advocate for Rare Cancers? If so, you need to know about the Training  Course from RCE-ESO-ESMO with travel grants available.

From 01-03 December 2018, the Rare Cancers Europe (RCE) initiative, in collaboration with the European School of Oncology (ESO) and the European Society for Medical Oncology (ESMO), is organising a specific training course for Rare Cancer Patient Advocates. 

The 2018 edition of the event will bring together patient advocates from across Europe, to exchange views and ideas with clinicians and researchers, who are attending the parallel ESO-ESMO-RCE Preceptorships and Clinical Update on Rare Adult Solid Cancers. 

Patient advocate travel grants available: Deadline 11th November

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Report from the first European Hematology Community Advisory Board (Hem-CAB) on 18 June 2018 in Stockholm, Sweden

hem cab1The European hematology patient community held its first hematology community advisory board (HEM-CAB) meeting in Stockholm on 18 June 2018. The hematology patient community is a very well-connected patient community in the area of rare diseases and oncology, with 12 pan-European patient umbrella organisations, including the CML Advocates Network, that have a network of over 250 member organisations that provide information for patients and carers, engage in EU and national policy and engage in research, development and regulatory affairs.

As an immediate follow-up action from the European Hematology Association (EHA) Congress, the first Hem-CAB meeting brought together leaders from the 12 pan-European umbrella patient organisations and representatives of eight pharmaceutical companies working in hematology. The CML Advocates Network was represented by Sarunas Narbutas and Jan Geissler.

The 8-hour Hem-CAB meeting was preceded by a 3-hour training session, preparing patient advocates about the structure and purposes of the meeting. While the meeting was held under confidentiality terms from all parties to allow for an open and frank discussion, key findings and action points are summarized in this report.

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