Overview
Lobbying Costs
9,999€
Financial year: Mar 2017 - Feb 2018
Lobbyists (Full time equivalent)
0.25 Fte (1)
Lobbyists with EP accreditation
0
High-level Commission meetings
1
Lobbying Costs over the years
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Info
FH Europe - the European FH patient network (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 groupMain 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 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
7 North Road
Maidenhead
Maidenhead SL6 1PE
UNITED KINGDOM -
People
Total lobbyists declared
1
Employment time Lobbyists 25% 1 Lobbyists (Full time equivalent)
0.25
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
Ms Jules Payne (Chair, FH Europe)
Person with legal responsibility
Ms Magdalena Daccord (Chief Executive, FH Europe)
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
FH Europe is not a member of any other pan-European body.
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
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Financial Data
Closed financial year
Mar 2017 - Feb 2018
Lobbying costs for closed financial year
9,999€
Other financial info
The organisation is currently supported by commercial sponsorship from varied sources, plus voluntary support.
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EU Structures
Groups (European Commission)
none
Groups (European Parliament)
None
Communication activities
In the last year we have not undertaken any visits to Brussels to the European Parliament or the European Commission.
Reflecting our commitment to ensuring early identification and diagnosis of Familial Hypercholesterolaemia (FH) patients to prevent early cardiovascular disease, we have collaborated with a paediatric consultant, Professor Albert Wiegman of the Netherlands, to report on the beneficial outcomes of paediatric testing for Familial Hypercholesterolaemia (FH) which is an autosomal dominant disorder. We submitted our report by end January 2019, including additional evidence published in a variety of medical journals for evaluation with the aim of this being included in the Best Practice Portal as an exemplar to raise awareness of the benefits of early testing for cardiovascular disease.”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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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)
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- Meetings