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CML Advocates Network at Eurordis Federations Council 2017

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Our Programme Manager Celia Marín on behalf of the Leukemia Patient Advocates Foundation participated at the “Council of European Rare Disease Federations” held in Paris on 26-27 October 2017 by the Rare Diseases Europe EURORDIS with 26 other patient organisation representatives from different communities such as Myeloma Patients Europe and Lymphoma Coalition.The two-day meeting was full of very informative and interesting sessions, starting with a joint meeting with the Council of National Alliances.

Agenda

eurordislogoDuring the first day, talks on RareConnect model, the successful survey developed by Eurordis “Rare Barometer” and how patient advocates organisations can use it, the implementation of the OrphanCode project in the National Health Care systems and European Reference Networks and the new Eurordis position on social policy were presented by several speakers.

The afternoon presented us with some interesting sessions encompassing some hot topics for the advocacy community such as “Latest developments in EUNetHTA & future legislation”,“Patient Engagement in scientific advice & rapid assessment”, and “Patient engagement in EMA Scientific Advice”.

Community Advisory Board Training

During the second day, Eurordis team presented a very intriguing workshop on Community Advisory Boards (CAB).

Topics like “What is a CAB” with Eurordis launching a platform to help its members with practical issues and for those who are interested to set up their own CAB, were just a part of the training.

The afternoon sessions had CF-Europe present their experience on creating a Community Advisory Board before attendees received Eurordis supporting documents to help them in this innovative initiative.

We were very proud to also have been able to share some of our experiences, development, challenges, success and tips about our CML-CAB management with the rest of the patient organisations’ we hope to have inspired the participants to wish them the same success when they form their own CAB

The CML Advocates Network implemented this Chronic Myeloid Leukaemia Community Advisory Board model in May 2016 and since that first meeting that followed CML Horizons we have generated huge interest from industry and have had three further successful meeting this year and preparations for further dialogue for 2018 have started.

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The CML Community Advisory Board (CML-CAB) is a working group of the CML Advocates Network where patient advocates leaders from all world regions, many of them living with CML, hardly work together to improve outcomes of CML patients including research priorities, access to treatment and to monitoring, patient information and capacity building of the CML community.

The CML Advocates Network has currently the leadership of Community Advisory Boards on cancer worldwide and it is very proud of keep on working on innovation for the CML patient community sharing its CML-CAB model as a good example of patient innovation on advocacy on promoting best-in-class CML research as well as harmonisation of good clinical practice, standard of care and access to best available CML therapies including diagnostic tools.

For more information about CML-CAB, visit our Community Advisory Board webpage.

 
 
 
 

 
   
 

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