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 researchMain 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 KINGDOMEU Office
Magdalena Daccord Av des Reneveyres 34
MOrges 1110
SWITZERLANDWebsite
-
People
Total lobbyists declared
4
Employment time Lobbyists 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
Funding types "other" information
Major contributions in closed year
Type Name Amount 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 ChecksOther 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.
1 July 2024: We have noted that some meetings are appearing in duplicate, ie. some meetings seem to be listed twice. This seems to be because the Commission changes some element of a meeting data after the meeting has first been listed, which causes LobbyFacts to register it as a new meeting. We are investigating further.
-
Date 12 Nov 2020 Location online Subject Social dialogue Cabinet Cabinet of Commissioner Nicolas Schmit Portfolio Jobs and Social Rights Attending - Andrea Nahles (Cabinet member)
Other Lobbyists
- Meetings