European Federation of Neurological Associations

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Registration as it was on 23 Nov 2023
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Overview

Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

Lobbying Costs

None declared

Financial year: Jan 2022 - Dec 2022

Lobbyists (Full time equivalent)

2.75 Fte (5)

Lobbyists with EP accreditation

3

High-level Commission meetings

2

Lobbying Costs over the years

  • Info

    European Federation of Neurological Associations   (EFNA)

    EU Transparency Register

    321826714452-53 First registered on 07 Oct 2014

    Goals / Remit

    The European Federation of Neurological Associations [EFNA] is an umbrella group representing pan-European neurology patient groups.

    Our slogan ‘Empowering Patient Neurology Groups’ encapsulates our goals as an Association. We strive to add capacity to our members – allowing them to be the most effective advocates possible in their own disease specific areas.

    EFNA embraces the concept of Partnership for Progress – working at a high level with relevant stakeholders from the fields of policy, medical, scientific/research, industry, patient partners and other key opinion leaders.

    Main EU files targeted

    EFNA coordinates an MEP Interest Group on Brain Health and Neurological Conditions and so we follow closely EU initiatives, policies and legislative files in the healthcare and research arenas which may impact on those affected by neurological disorders.

    EFNA also co-founded the Global OneNeurology Initiative which is working with WHO to develop a 10 year intersectoral global action plan on epilepsy and other neurological disorders, which we hope will influence the EU Institutions to similarly prioritize neurology.

    Address

    Head Office
    Rue d'Egmont, 11
    Brussels 1000
    BELGIUM
    EU Office
    EFNA 11 Rue d'Egmont Brussels
    Brussels 1000
    IRELAND

    Website

  • People

    Total lobbyists declared

    5

    Employment timeLobbyists
    100%1
    50%3
    25%1

    Lobbyists (Full time equivalent)

    2.75

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    3 accreditations were / are live (in bold) for the selected state of 20 Jun 2024

    Name Start date End Date
    Orla GALVIN 07 Mar 2024 06 Mar 2025
    Tadeusz Hawrot 25 Oct 2023 24 Oct 2024
    Astri ARNESEN 07 Mar 2024 06 Mar 2025
    Tadeusz Hawrot 13 Oct 2022 13 Oct 2023
    Tadeusz Hawrot 16 Oct 2021 08 Oct 2022
    Ms Donna Walsh 18 Mar 2020 18 Mar 2021
    Tadeusz Hawrot 03 Dec 2019 03 Dec 2020
    Ms Joke JAARSMA 24 Aug 2019 22 Aug 2020
    Ms Donna Walsh 30 Mar 2019 18 Mar 2020
    Ms Nancy van Hoylandt 30 Mar 2019 01 Apr 2020
    Tadeusz Hawrot 07 Nov 2018 07 Nov 2019
    Ms Nancy van Hoylandt 10 Mar 2018 09 Mar 2019
    Ms Donna Walsh 07 Mar 2018 07 Mar 2019
    Ms HEATHER CLARKE 15 Jan 2018 03 Nov 2018
    Ms Elizabeth Cunningham 20 Nov 2017 16 Nov 2018
    Ms Nancy van Hoylandt 20 Mar 2017 21 Feb 2018
    Ms Donna Walsh 21 Feb 2017 16 Feb 2018
    Ms HEATHER CLARKE 23 Jan 2017 14 Jan 2018
    Ms Cathalijne Van Doorne 12 Mar 2016 11 Mar 2017
    Ms Elizabeth Cunningham 05 Mar 2016 04 Mar 2017
    Ms Nancy van Hoylandt 05 Mar 2016 04 Mar 2017
    Ms Donna Walsh 04 Mar 2016 22 Feb 2017
    Ms HEATHER CLARKE 16 Jan 2016 15 Jan 2017
    Ms Cathalijne Van Doorne 17 Dec 2014 14 Dec 2015
    Mrs Cathalijne Van Doorne 17 Dec 2014 27 Jan 2015
    Ms HEATHER CLARKE 13 Dec 2014 10 Dec 2015
    Ms Ann Little Holmes 12 Dec 2014 10 Dec 2015
    Ms Donna Walsh 25 Nov 2014 21 Nov 2015
    Ms Audrey Craven 25 Nov 2014 21 Nov 2015

    Complementary Information

    None declared

    Person in charge of EU relations

    Data not provided by Register Secretariat due to GDPR

    Person with legal responsibility

    Data not provided by Register Secretariat due to GDPR

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    European Brain Council
    European Patients Forum
    Non-Communicable Disease Alliance

    Member organisations

    Euro-Ataxia(0),
    Dystonia Europe(0),
    EPODIN(0),
    European Alliance of Neuromuscular Disorders Association(0),
    European Alliance for Restless Legs Syndrome(0),
    European Headache Alliance(0),
    European Multiple Sclerosis Platform(0),
    European Polio Union(0),
    European Sexual Health Alliance(0),
    EUMGA(0),
    European Huntington's Disease Association(0),
    IBE(0),
    International Brain Tumour Alliance(0),
    Pain Alliance Europe(0),
    Retina International(0),
    Stroke Alliance for Europe(0),
    ADHD Europe,
    European Parkinson's Disease Association
    European ME Alliance

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2022 - Dec 2022

    Lobbying costs for closed financial year

    Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.

    Total organisational budget in closed year

    400,000€

    Major funding types in closed year

    Other, Member's contribution

    Funding types "other" information

    Major contributions in closed year

    TypeNameAmount
    Contribution Novartis 105,000€
    Contribution Roche 110,000€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    See above

    Communication activities

    EFNA also runs training initiatives for neurology advocates. In 2023-2024, this will include a focus on implementation of the 10-year intersectoral global action plan on epilepsy and other neurological conditions. This includes access to diagnosis, treatment and care, the establishment of neurological health plans, awarenss campaigns, promotion of brain health and prevention of neurological conditions. This is supported by patient involvement in specific consultations around associated policies such as revisions to the pharma legislation and HTA processes.

    Other activities

    None declared

  • Meetings

    Meetings

    2 meetings found. Download meetings

    The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.

    • Date 18 Nov 2020 Location Virtual meeting
      Subject Exchange of views with EFNA, EAN and EBC on EU4Health, the impact of COVID-19 on mental and neurological health and their participation and contribution in the Health Policy Platform and other fora.
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Panayiotis Pourgourides (Cabinet member)
      • Ines Prainsack (Cabinet member)
      Other Lobbyists
    • Date 19 Feb 2015 Location Brussels, Belgium
      Subject Range of brain related deseases
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Arunas Vinciunas (Cabinet member)
      Other Lobbyists
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