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European ME Alliance: "A Roundtable of European Stakeholders and Policymakers", 9th June 2021

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Apr 24, 2021.

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  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    "Following joint planning sessions EMEA and EFNA (European Federation of Neurological Associations) are arranging a multi-stakeholder, roundtable meeting on Myalgic Encephalomyelitis (ME/CFS) in Europe.

    The meeting will bring together a variety of initial stakeholders in Europe, including clinicians, researchers, policymakers, industry and patient representatives from EMEA's members, in order to create a better understanding of the many unmet needs and the devastating impact of ME/CFS on patients and families across generations.

    The meeting will also include discussions on the implications of Long COVID - including similarities to ME/CFS."

    ....

    "The roundtable will establish a forum that will form the basis for initiatives to be developed and maintained in the future by highlighting opportunities and solutions on how to fill the gaps in research, treatment and perception of ME and how to build the necessary infrastructure to make sustained progress and improve patients’ lives.

    The forum is planned to be an ongoing event allowing more informed opinion about the disease to be created and solutions to be initiated as we build up the stakeholder group."

    https://europeanmealliance.org/meineurt.shtml

     
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  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I don't know how the stakeholders are selected or can apply but @Michiel Tack , it would be good to see the European ME Coalition as part of this, and @cassava7 , is there any French group that could take part?
     
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  3. cassava7

    cassava7 Senior Member (Voting Rights)

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    As far as I know, ASFC (the national association) is part of EMEA but they are inactive there. It seems that they do not have enough resources to focus on international advocacy efforts. I can't speak for Millions Missing France but they are much more involved in advocacy -- including internationally, their open letter last year is a good example -- so if they could be put in touch with EMEA, I think they would be happy to consider participating.
     
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  4. Wyva

    Wyva Senior Member (Voting Rights)

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  5. Wyva

    Wyva Senior Member (Voting Rights)

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  6. strategist

    strategist Senior Member (Voting Rights)

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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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