FH Europe

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Registration as it was on 13 May 2022
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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 2021 - Dec 2021

Lobbyists (Full time equivalent)

0.75 Fte (1)

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 Hypercholesterolaemia (FH) patients to prevent early cardiovascular disease.

    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

    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 not responded to any policy consultation documents at present.

    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

  • People

    Total lobbyists declared

    1

    Employment timeLobbyists
    75%1

    Lobbyists (Full time equivalent)

    0.75

    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    FH Europe has provided administrative and drafting support in relation to the work of a medical expert on paediatric FH which was submitted to the Best Practice Portal for evaluation in 2019 in order to promote this example of best practice.

    FH Europe and its member organisations seek to promote best practice in treatment of patients and are willing to commit voluntary and any other available resource to promote such practice.

    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.

    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

    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

    200,000€

    Major funding types in closed year

    Donations, Grants

    Major contributions in closed year

    TypeNameAmount
    Contribution Amgen 40,000€
    Contribution Amryt 40,000€
    Contribution Silence 22,000€
    Contribution Novartis 50,000€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    none

    Groups (European Parliament)

    N/A

    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 publish information about such meetings. All information below comes from European Commission web pages.

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