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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ASH 2017 in Atlanta, USA: CML patient advocates information

ashlogoJust two weeks left until the 59th ASH Annual Meeting and Exposition opens its doors on 9th December in Atlanta, USA. We are hoping to see many CML Advocates at #ASH17!

This is the world’s most comprehensive haematology event of the year and it is very important to be ready before the meeting as CML advocates in order not to miss out on any important session about chronic myeloid leukaemia.

We are happy to share with you some key information about CML sessions hoping it will assist you to prepare and outline your days and make the most out of your time whilst at #ASH17.

Click on "Read more" and check what is offered for patient advocates, haematologists and other stakeholders interested in CML at American Society of Hematology Annual Meeting this year. If you are coming to #ASH17, don't miss any of them, they will all be really interesting!

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Webinar: GENERIC TKIs IN CML

The Glivec patent expires in most countries latest on 21 Dec 2016.

The CML Advocates Network has been following the situation of TKI generics closely for 3 years, and has now provided a webinar which summarizes the current status.

This webinar answers some important questions, such as:

  • What are generics, and do they differentiate from innovator products?
  • Which generics of CML Tyrosine Kinase Inhibitors exist?
  • What do we know about efficacy and safety?
  • What information on CML generics is available to patients?
  • What has the patient advocacy community done so far?
  • What can patients and patient advocacy groups do about CML generics?

More can be found on our CML Advocates Network Knowledge Base on CML Generics at http://www.cmladvocates.net/generics.

If you want access to the slides, please contact Jan Geissler at .

Webstream via AuthorStream (allows to skip slides)

 

 

 

 

 

 

 

 

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