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FH Europe

Acronym: FH Europe

General Information

Identification Code: 302460130801-47
Website: [object Object]
Entity Form: Charity registered with the Charity Commission in England and Wales
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 4/3/2018
Last Update: 3/19/2024
EP Accredited Number: 0

Mission & Interests

Goals: 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
Interests Represented: Does not represent commercial interests
Interests:
  • Digital economy and society
  • Education and training
  • Employment and social affairs
  • Food safety
  • Humanitarian aid and civil protection
  • Migration and asylum
  • Public health
  • Regional policy
  • Research and innovation
  • Sport
  • Youth
Levels of Interest:
  • european

Activities

Main EU Legislative Proposals: 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.
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
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Star House, Star HillRochester
Post Code: ME1 1UX
City: Rochester
Country: UNITED KINGDOM
Phone: [object Object]

EU Office

Address: Magdalena DaccordAv des Reneveyres 34
Post Code: 1110
City: MOrges
Country: SWITZERLAND
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: 2023 is the year, when FH Europe, the England and Wales registered charity was transitioning to FH Europe Foundation in the Netherlands.

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 4
Members: 4
Members F T E: 3
Info Members: FH Europe has provided administrative support, expert support, cocreated or lead entirely projects related to activities listed in section nr. 9

Structure

Structure Type: Structure
Is Member Of: 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.
Organisation Members: 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.