European Huntington Association VZW

Tweet this page
<
2019
2020
2021
2022
2023
>
No longer registered as of 14 Mar 2024 - Registration as it was on 07 Mar 2023
How to read and use this data card.
Download this datacard

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 2021 - Dec 2021

Lobbyists (Full time equivalent)

0.25 Fte (1)

Lobbyists with EP accreditation

0

High-level Commission meetings

0

Lobbying Costs over the years

  • Info

    European Huntington Association VZW   (EHA)

    EU Transparency Register

    322419733882-57 First registered on 06 Feb 2019

    Goals / Remit

    EHA is a non-profit umbrella organisation for HD patient organizations all over Europe. It was established in 1986. We have 45 member associations in 32 different countries. The board is elected by the business meeting every second year.
    EHA is supporting and encouraging collaboration across borders. We represent a unique network and use this network to exchange knowledge and experiences both among associations and professionals.
    We work to motivate the HD community to participate in research and clinical trials
    We work to raise awareness of HD
    We work to be strong patient advocates and use our impact towards health authorities, governments, researchers and pharma industry
    We encourage and help set up new associations for HD in regions and countries where there are none.
    EHA is collaborating closely with the European Huntington Disease Network (EHDN) who coordinates and are leading in the search for treatment in HD. EHA is involved in activities as enhancing p (...)

    Main EU files targeted

    European Reference Networks in Rare Neurological Diseases
    Policies aiming to secure equitable access to treatment, services and support
    The Pharmaceutical Strategy and HTA collaboration and overnational price negotiations

    Address

    Head Office
    Spelonckvaart 30
    Moerbeke Waas 9180
    BELGIUM
    EU Office
    Spelonckvaart 30
    Moerbeke Waas 9180
    BELGIUM

    Website

  • People

    Total lobbyists declared

    1

    Employment timeLobbyists
    25%1

    Lobbyists (Full time equivalent)

    0.25

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    EHA has several objectives and activities. Only a small part of our work is focused on EU policy.

    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

    Eurordis https://www.eurordis.org/
    EFNA - European Federation of Neurological Associations https://www.efna.net/

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2021 - Dec 2021

    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

    150,000€

    Major funding types in closed year

    Other

    Funding types "other" information

    Major contributions in closed year

    TypeNameAmount
    Contribution Novartis 50,000€
    Contribution Roche 40,000€
    Contribution Uniqure 25,000€
    Contribution Wave Life Science 15,000€
    Contribution PTC 10,000€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    N/A

    Communication activities

    None

    Other activities

    None declared

  • Meetings

    Meetings

    None declared

Download this datacard