Overview
Lobbying Costs
179,924€
Financial year: Mar 2017 - Feb 2018
Lobbyists (Full time equivalent)
1 Fte (2)
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
As noted by Eurostat (Sept 2017) cardiovascular diseases are the leading cause of death in the EU. FH Europe noted the European Parliament reports on Access to Medicines in 2015, which reflected the desire of patients to ensure equality of access to treatment across Europe. When raising awareness of recent research, FH Europe learnt of the development of a best practice portal for non-communicable diseases and has expressed its desire to submit an example of successful FH paediatric testing so that knowledge of good practice will be shared with other member states, whether or not they have FH patient associations.
Address
Head Office
7 North Road
Maidenhead
Maidenhead SL6 1PE
UNITED KINGDOM -
People
Total lobbyists declared
2
Employment time Lobbyists 75% 1 25% 1 Lobbyists (Full time equivalent)
1
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
FH Europe is providing administrative support in relation to the work of a medical expert on paediatric FH 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 Jules Payne (Chair, 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 European Atherosclerosis Society conference, either to man a stand or to have a representative(s) as guest patient association speaker. Has also attended 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
179,924€
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 October 2015 FH Europe founder members attended a meeting in the Europe Parliament on heart health and published a Call to Action https://fheurope.org/policy/2015-call-to-action/, support for which was signed by a number of MEP Heart Group members.
In 2016 "Introducing FH Europe 2016 directory" was published and at year end, FH Europe was established as a charity. In 2017 a 'heatmap' relating to availability of treatment and registries https://fheurope.org/policy/heatmap/ was produced to illustrate the state of progress in treatment around Europe.
A follow-up meeting to the 2015 Call to Action was planned for March 2017 in the European Parliament, to include a speaker from the European Commission. The planned event elicited a low MEP response and was cancelled: instead two Trustees visited Brussels, accompanied by a paediatric FH specialist. The team of three met an MEP and MEP support staff, in order to discuss patient concerns around Europe and inform them of current paediatric research results. Contact was made with the European Commissioner's office in autumn 2017 to provide a similar briefing and in a telephone meeting, FH Europe was made aware of the planned 2018 introduction of a best practice portal for non-communicable diseases.
National member organisations attend national and regional events to promote awareness and often to provide free cholesterol testing to members of the public, for example on or around FH Awareness Day on 24 September. Some organisations have meetings with regional and national decision-makers to express patient concerns. News of patient association activities, research and other developments is shared in a two-monthly e-newsletter.Other activities
FH Europe is interested in participating in activities and receiving/providing information on best practice, research etc in relation to non-communicable diseases, in particular Familial Hypercholesterolaemia (both heterozygous and homozygous) and related lipid conditions such as FCS.
FH Europe has not yet participated in any consultation responses at European level.- 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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