CML Advocates Network

The 45th EBMT (European Society for Blood and Marrow Transplantation) Congress will be held in Frankfurt, Germany during March 24th to 27th, 2019. The EBMT is happy to announce that they have added a new segment to the Congress and would like to introduce the new parallel session "Patient Advocacy Program" which will run as a part of the 13th Annual Patient, Family and Donor Day, taking place on Sunday, March 24th, 2019. 

Be a part of the Patient Advocacy Program for the 13^th Annual Patient, Family and Donor Day that is held at the annual EBMT Congress in Frankfurt, Germany.

Patient advocates are invited to participate in this remarkable and essential annual event of the: Patient, Family and Donor Day, that will now include a Patient Advocacy Track and it is free to attend. 

There is also the opportunity to be able to have access to the full EBMT Congress (March 24th – 27th), by applying for a free registration. You will need to be quick to apply as there is a limited amount of 30 available for patient advocates. 

DIA Europe 2019 is an annual conference organized by the global association DIA that connects life science professionals from many different areas with patients, peers and thought leaders. 

From 5th to 7th February 2019, key thought leaders and healthcare innovators as the industry, academia, regulatory, government agencies, patient, and philanthropic organizations will come from across all disciplines involved in healthcare products and therapies. The meeting is intended to strengthen professionals’ understanding of the value of cross-discipline integration and to foster innovation for better health outcomes. 

For more information, please visit the Dia Europe 2019 website.

Apply for a fellowship by Wednesday, the 5th of December 2018, 12:00 CET

This year's conference will take place at the Austria Center Vienna from the 5th to the 7th of February 2019.

DIA Europe 2019 is offering up to five Full Fellowships and up to fifteen Registration Fee waivers to include the patient representatives input in the conversation.

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

The 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.