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 2022 - Dec 2022
Lobbyists (Full time equivalent)
2.75 Fte (5)
Lobbyists with EP accreditation
3
High-level Commission meetings
2
Lobbying Costs over the years
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Info
European Federation of Neurological Associations (EFNA)
EU Transparency Register
321826714452-53 First registered on 07 Oct 2014
Goals / Remit
The European Federation of Neurological Associations [EFNA] is an umbrella group representing pan-European neurology patient groups.
Our slogan ‘Empowering Patient Neurology Groups’ encapsulates our goals as an Association. We strive to add capacity to our members – allowing them to be the most effective advocates possible in their own disease specific areas.
EFNA embraces the concept of Partnership for Progress – working at a high level with relevant stakeholders from the fields of policy, medical, scientific/research, industry, patient partners and other key opinion leaders.Main EU files targeted
EFNA coordinates an MEP Interest Group on Brain Health and Neurological Conditions and so we follow closely EU initiatives, policies and legislative files in the healthcare and research arenas which may impact on those affected by neurological disorders.
EFNA also co-founded the Global OneNeurology Initiative which is working with WHO to develop a 10 year intersectoral global action plan on epilepsy and other neurological disorders, which we hope will influence the EU Institutions to similarly prioritize neurology.Address
Head Office
Rue d'Egmont, 11
Brussels 1000
BELGIUMEU Office
EFNA 11 Rue d'Egmont Brussels
Brussels 1000
IRELANDWebsite
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People
Total lobbyists declared
5
Employment time Lobbyists 100% 1 50% 3 25% 1 Lobbyists (Full time equivalent)
2.75
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
3 accreditations were / are live (in bold) for the selected state of 26 Apr 2024
Name Start date End Date Orla GALVIN 07 Mar 2024 06 Mar 2025 Tadeusz Hawrot 25 Oct 2023 24 Oct 2024 Ms Orla GALVIN 07 Mar 2024 15 Apr 2024 Astri ARNESEN 07 Mar 2024 06 Mar 2025 Mr Tadeusz Hawrot 25 Oct 2023 15 Apr 2024 Mr Tadeusz Hawrot 13 Oct 2022 13 Oct 2023 Mr Tadeusz Hawrot 16 Oct 2021 08 Oct 2022 Ms Donna Walsh 18 Mar 2020 18 Mar 2021 Mr Tadeusz Hawrot 03 Dec 2019 03 Dec 2020 Ms Joke JAARSMA 24 Aug 2019 22 Aug 2020 Ms Donna Walsh 30 Mar 2019 18 Mar 2020 Ms Nancy van Hoylandt 30 Mar 2019 01 Apr 2020 Mr Tadeusz Hawrot 07 Nov 2018 07 Nov 2019 Ms Nancy van Hoylandt 10 Mar 2018 09 Mar 2019 Ms Donna Walsh 07 Mar 2018 07 Mar 2019 Ms HEATHER CLARKE 15 Jan 2018 03 Nov 2018 Ms Elizabeth Cunningham 20 Nov 2017 16 Nov 2018 Ms Nancy van Hoylandt 20 Mar 2017 21 Feb 2018 Ms Donna Walsh 21 Feb 2017 16 Feb 2018 Ms HEATHER CLARKE 23 Jan 2017 14 Jan 2018 Ms Cathalijne Van Doorne 12 Mar 2016 11 Mar 2017 Ms Elizabeth Cunningham 05 Mar 2016 04 Mar 2017 Ms Nancy van Hoylandt 05 Mar 2016 04 Mar 2017 Ms Donna Walsh 04 Mar 2016 22 Feb 2017 Ms HEATHER CLARKE 16 Jan 2016 15 Jan 2017 Ms Cathalijne Van Doorne 17 Dec 2014 14 Dec 2015 Mrs Cathalijne Van Doorne 17 Dec 2014 27 Jan 2015 Ms HEATHER CLARKE 13 Dec 2014 10 Dec 2015 Ms Ann Little Holmes 12 Dec 2014 10 Dec 2015 Ms Donna Walsh 25 Nov 2014 21 Nov 2015 Ms Audrey Craven 25 Nov 2014 21 Nov 2015 Complementary Information
None declared
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
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
European Brain Council
European Patients Forum
Non-Communicable Disease AllianceMember organisations
Euro-Ataxia(0),
Dystonia Europe(0),
EPODIN(0),
European Alliance of Neuromuscular Disorders Association(0),
European Alliance for Restless Legs Syndrome(0),
European Headache Alliance(0),
European Multiple Sclerosis Platform(0),
European Polio Union(0),
European Sexual Health Alliance(0),
EUMGA(0),
European Huntington's Disease Association(0),
IBE(0),
International Brain Tumour Alliance(0),
Pain Alliance Europe(0),
Retina International(0),
Stroke Alliance for Europe(0),
ADHD Europe,
European Parkinson's Disease Association
European ME Alliance -
Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2022 - Dec 2022
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
400,000€
Major funding types in closed year
Other, Member's contribution
Major contributions in closed year
Type Name Amount Contribution Novartis 105,000€ Contribution Roche 110,000€ Other financial info
None declared
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EU Structures
Groups (European Commission)
none
Groups (European Parliament)
See above
Communication activities
EFNA also runs training initiatives for neurology advocates. In 2023-2024, this will include a focus on implementation of the 10-year intersectoral global action plan on epilepsy and other neurological conditions. This includes access to diagnosis, treatment and care, the establishment of neurological health plans, awarenss campaigns, promotion of brain health and prevention of neurological conditions. This is supported by patient involvement in specific consultations around associated policies such as revisions to the pharma legislation and HTA processes.
Other activities
None declared
Meetings
Meetings
2 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 18 Nov 2020 Location Virtual meeting Subject Exchange of views with EFNA, EAN and EBC on EU4Health, the impact of COVID-19 on mental and neurological health and their participation and contribution in the Health Policy Platform and other fora. Cabinet Cabinet of Commissioner Stella Kyriakides Portfolio Health Attending - Panayiotis Pourgourides (Cabinet member)
- Ines Prainsack (Cabinet member)
Other Lobbyists -
Date 19 Feb 2015 Location Brussels, Belgium Subject Range of brain related deseases Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Arunas Vinciunas (Cabinet member)
Other Lobbyists