FH Europe

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Registration as it was on 19 Mar 2024
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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 2023 - Dec 2023

Lobbyists (Full time equivalent)

3 Fte (4)

Lobbyists with EP accreditation

0

High-level Commission meetings

1

Lobbying Costs over the years

  • Info

    FH Europe   (FH Europe)

    EU Transparency Register

    302460130801-47 First registered on 03 Apr 2018

    Goals / Remit

    The objectives of FH Europe are to actively work to secure early identification and diagnosis of Familial Hyperlipidemias, including FH, HoFH, elevated Lp(a) and FCS to prevent early cardiovascular disease and other health consequences.

    Our aims as a patient association are to:
    Share information and best practice across Europe
    Work with experts to focus on themes and topics of interest to the patients and families we represent
    Support development of newer or smaller patient groups and individuals wanting to start a patient group
    Influence health policies
    Conduct research

    Main EU files targeted

    We are interested in following European Union health policy relating to cardiovascular disease and lipid disorders,in particular Familial Hypercholesterolaemia (both heterozygous and homozygous) and related lipid conditions such as LP(a) and FCS. This falls within the European Union policy area of non-communicable diseases.

    We have responded to policy consultation documents related to Cardiovascular Diseases.

    Address

    Head Office
    Star House, Star Hill Rochester Kent
    Rochester ME1 1UX - ME1 1UX
    UNITED KINGDOM
    EU Office
    Magdalena Daccord Av des Reneveyres 34
    MOrges 1110
    SWITZERLAND

    Website

    https://www.fheurope.org

  • People

    Total lobbyists declared

    4

    Employment timeLobbyists
    75%4

    Lobbyists (Full time equivalent)

    3

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    FH Europe has provided administrative support, expert support, cocreated or lead entirely projects related to activities listed in section nr. 9

    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

    FH Europe is a member of EURORDIS, European Patients Forum, World Heart Federation and a partner of the European Alliance for Cardiovascular Health.

    It regularly attends the European Atherosclerosis Society annual Congress to have a representative(s) as guest patient association speaker. In March 2019 FH Europe signed an agreement with the European Atherosclerosis Society FHSC (Familial Hypercholesterolaemia Standing Collaboration) to collaborate on an exchange of information and best practice to promote improvements in treatment for patients with FH and other dyslipidaemias. (Announcement: https://www.eas-society.org/mpage/190326). Information to appear also on FH Europe website (www.fheurope.org ).

    FH Europe has also attended the European Society of Cardiologists conference.

    Member organisations

    Details on all FH Europe member organisations appear on the FH Europe website: https://fheurope.org/member-organisations/members/
    Most of the member associations are run on a voluntary basis, a small number are large enough to have paid staff members, some of whom are employed on a part-time basis.

  • Financial Data

    Interests represented

    Does not represent commercial interests

    Closed financial year

    Jan 2023 - Dec 2023

    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

    390,000€

    Major funding types in closed year

    Donations, Other, Grants

    Major contributions in closed year

    TypeNameAmount
    Contribution Amryt 42,000€
    Contribution Ultragenyx 35,000€

    Other financial info

    2023 is the year, when FH Europe, the England and Wales registered charity was transitioning to FH Europe Foundation in the Netherlands.

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    N/A

    Communication activities

    2021 FH Paediatric Screening becomes Best Practice and available on Portal as an exemplar to raise awareness of the benefits of early testing for cardiovascular disease.
    2021 - High level technical meeting on FH Paediatric Screening under the Slovenian Presidency
    2022 - events under the European Alliance for Cardiovascular Health and launch of the CVH Plan
    2022 - FH Open Letter to the French Government re FH Paediatric Screening during the French EU Presidency
    2022 - High level political meeting in the Czech Senate on FH Paediatric Screening under the auspices of the Czech EU Presidency and publication of the Prague Declaration
    2023 - EU Parliament Event on CVD and Diabetes Health Checks

    Other activities

    None declared

  • Meetings

    Meetings

    1 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.

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