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: Feb 2022 - Jan 2023
Lobbyists (Full time equivalent)
7.25 Fte (8)
Lobbyists with EP accreditation
2
High-level Commission meetings
0
Lobbying Costs over the years
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Info
European Haemophilia Consortium (EHC)
EU Transparency Register
786550013705-85 First registered on 27 May 2014
Goals / Remit
The European Haemophilia Consortium (EHC) is an international non-profit organisation representing 48 national patient organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe.
The EHC represents over 90,000 people diagnosed with a rare bleeding conditions such as haemophilia, von Willebrand Disease and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder.
The EHC's main external objectives are to:
1) Support and empower National Member Organisations (NMOs) at national and European levels and help them to engage with each other;
2) Promote access to optimal treatment and comprehensive care for people with rare bleeding disorders in Europe;
3) Ensure constructive engagement with key stakeholders; and
4) Work proactively in and contribute to European policy-making for rare bleeding di (...)Main EU files targeted
Clinical Trial Regulation, Orphan Medicinal Product Regulation, Cross-Border Healthcare Directive, Blood Directive, Transparency Directive, Public Procurement Directive, HTA legislation, ATMPs, social policies, disability-related policies, gender equality, EU Health Data Space, EU Health Union, Pharmaceutical legislation, Mental Health, Women's Health, AI Act
Address
Head Office
Rue de la Loi 28
Brussels 1040
BELGIUMEU Office
Rue de la Loi 28
Brussels 1040
BELGIUMWebsite
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People
Total lobbyists declared
8
Employment time Lobbyists 100% 5 75% 3 Lobbyists (Full time equivalent)
7.25
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
2 accreditations were / are live (in bold) for the selected state of 05 Jan 2025
Name Start date End Date Olivia ROMERO LUX 30 Sep 2024 30 Sep 2025 Roberta Sadauskaite 30 Sep 2024 30 Sep 2025 Ms Kristine JANSONE 20 Apr 2023 26 Apr 2024 Ms Daria MIRONOVA 07 Feb 2023 07 Feb 2024 Ms Laura Savini 04 Feb 2023 03 Feb 2024 Ms Nastassia KISIALEVA 13 Feb 2020 01 Mar 2021 Ms Laura Savini 24 May 2019 23 May 2020 Mr Fay Amanda Bok 24 May 2019 23 May 2020 Mr Johan Eerens 24 May 2019 13 Feb 2020 Ms Kristine JANSONE 24 May 2019 23 May 2020 Saskia PFEYFFER 24 May 2019 23 May 2020 Ms Fiona BRENNAN 06 Feb 2019 01 Mar 2020 Mr Charles KINNEY 05 Feb 2019 25 Jun 2019 Ms Laura Savini 18 May 2018 18 May 2019 Mr Fay Amanda Bok 18 May 2018 18 May 2019 Mr Johan Eerens 18 May 2018 18 May 2019 Ms Raia Mihaylova 18 May 2018 03 Feb 2019 Ms Kristine JANSONE 18 May 2018 18 May 2019 Saskia PFEYFFER 18 May 2018 18 May 2019 Ms Laura Savini 12 May 2017 09 May 2018 Mr Fay Amanda Bok 12 May 2017 09 May 2018 Mr Johan Eerens 12 May 2017 09 May 2018 Ms Kristine JANSONE 23 Feb 2017 22 Feb 2018 Ms Raia Mihaylova 25 Jan 2017 24 Jan 2018 Saskia PFEYFFER 22 Oct 2016 21 Oct 2017 Ms Laura Savini 27 Apr 2016 27 Apr 2017 Mr Fay Amanda Bok 27 Apr 2016 27 Apr 2017 Mr Johan Eerens 27 Apr 2016 27 Apr 2017 Ms Kristine JANSONE 13 Oct 2015 09 Oct 2016 Ms Laura Savini 07 May 2015 27 Apr 2016 Mr Fay Amanda Bok 07 May 2015 27 Apr 2016 Mr Johan Eerens 07 May 2015 27 Apr 2016 Ms Laura Savini 03 Jun 2014 07 May 2015 Mr Fay Amanda Bok 03 Jun 2014 07 May 2015 Mr Johan Eerens 03 Jun 2014 07 May 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
Eurordis
European Patients' Forum (EPF)Member organisations
Albanian Hemophilia Association(294),
Armenian Association Hemophilics(228),
Österreichischen Hämophilie Gesellschaft (ÖHG)(717),
Azerbaijan Republic Association of Haemophilia (ARAH)(1400),
Belarusian Association Hemophilia(800),
Belgian Haemophilia Society(3000),
Hemophilia Association of Bosnia & Herzegovina(50),
Bulgarian Haemophilia Association(730),
Croatian Hemophilia Society(50),
Pancyprian Organization for Rehabilitation of Haemophiliacs(10),
Czech Haemophilia Society(1500),
Danmarks Bløderforening(800),
Eesti Hemofiiliauhing(50),
Finish Hemophilia Society(3500),
Association Francaise des Hémophiles(7500),
Georgian Association of Hemophilia and Donors(300),
Deutsche Hämophilie Gesellschaft (DHG)(9000),
Greek Haemophilia Society(2000),
Magyar Hemofilia Egyesulet(200),
Icelandic Haemophilia Society(50),
Irish Haemophilia Society(2500),
Israeli Hemophilia Association(600),
Federazione delle Associazioni Emofilici(8000),
Community of Handicapped - Hemophiliacs in Kyrgyz Republic (350),
Latvijas Hemofilijas Biedrība(250),
Lietuvos Hemofiljos Associja(450),
Association Luxembourgeoise des Hémophiles(25),
Maltese Bleeding Disorders Society (50)
Hemolog(300),
Moldavian Public Society of Haemophilie(230),
Montenegrin Association for Hemophilia(20),
Nederlandse Vereniging van Hemofilie-Patiënten (NVHP)(3000),
Norwegian Haemophilia Society(1500),
Polish Hemophilia Society(4000),
Associação Portuguesa de Hemofilia(700),
Romanian Hemophilia Association(2000),
Russian Hemophilia Society(8000),
Serbian Hemophilia Society(250),
Slovenské hemofilické združenie(500),
Drustvo Hemofilikov Slovenije(2000),
Federación Española de Hemofilia(3000),
Swedish Hemophilia Society(3000),
Schweizerische Hämophilie-Gesellschaft (SHG)(1000),
Tajikistan Hemophilia Society (500)
Hemophilia Society of Turkey(8000),
Ukrainian Hemophilia Union(3000),
The Haemophilia Society(23000)
Uzbekistan Hemophilia Society (500) -
Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Feb 2022 - Jan 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
2,844,482€
Major funding types in closed year
Grants, Member's contributions, Donations, Other
Funding types "other" information
EHC's income is made up of membership fees, events' revenue, volunteer time and industry funding provided in the form of educational grants.
Major contributions in closed year
Type Name Amount Contribution Takeda 120,000€ Contribution Pfizer 160,000€ Contribution Sobi 235,000€ Contribution Sanofi 245,000€ Contribution Regeneron 80,000€ Contribution Roche 185,000€ Contribution Spark 45,000€ Contribution Biomarin 175,000€ Contribution CSL 95,000€ Contribution Novo Nordisk 95,000€ Other financial info
error message appears but we entered contributors with more than 10% contribution and 10000 eur in total, other contributors are below 10% - the full list of contributors with the respective amount can be found here https://www.ehc.eu/financial-information-2022/
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EU Structures
Groups (European Commission)
None declared
Groups (European Parliament)
N/A
Communication activities
Awareness campaigns, responding to consultations, representation with the European Commission, European Parliament and European Medicines Agency
Other activities
None declared
Meetings
Meetings
None declared