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)
4.75 Fte (5)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
-
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 Roi 28/5
Brussels 1000
BELGIUMEU Office
Rue de la Roi 28/5
Brussels 1000
BELGIUMWebsite
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People
Total lobbyists declared
5
Employment time Lobbyists 100% 4 75% 1 Lobbyists (Full time equivalent)
4.75
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
0 accreditations were / are live (in bold) for the selected state of 04 May 2024
Name Start date End Date 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
None declared
-
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
2,152,520€
Major funding types in closed year
Other, Grants, Donations, Member's contribution
Funding types "other" information
Major contributions in closed year
Type Name Amount Contribution Volunteers contribution 359,190€ Contribution SOBI 255,000€ Contribution Sanofi 329,000€ Contribution CSL 150,000€ Contribution Biomarin 172,492€ Contribution Takeda 185,728€ Contribution Roche 215,000€ 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
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
- National Member Organisations workshops for EU-Member State organisations on Economics and Health Technology Assessments, New Technologies and Youth Leadership
- Four Quarterly EU Policy Reports for National Member Organisations
- Three annual newsletters/magazines for all stakeholders
- Annual scientific conference combined with training
- Annual members' leadership conference
- World Haemophilia Day campaign
- Advocacy meetings with the European Medicines Agency, MEPs and the European Commission
- Inhibitor network for patients who developed antibodies against their treatment. This network includes a face-to-face Summit meeting for patients and caregivers, workshops, publications and an on-line platform for community building and exchange.
- The Procurement of Affordable Replacement Therapies – Network of European Relevant Stakeholders (PARTNERS) programme is a multi-stakeholder and innovative approach to creating a sustainable procurement model for treatment for haemophilia A and haemophilia B in countries located both inside and outside of the European Union. Its main objective is to increase access to vital treatment for over 5000 people with haemophilia in European countries that currently significantly under-treat haemophilia patients, substantially improving their quality of life.
- Conference on Women and Rare Bleeding Disorders
- Think Tank initiative
Meetings
Meetings
None declared