Overview
Lobbying Costs
250,000€
Financial year: Jan 2016 - Dec 2016
Lobbyists (Full time equivalent)
5 Fte (6)
Lobbyists with EP accreditation
5
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 that represents 45 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 condition 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 pro-actively in and contribute to European policy-making for rare bleeding disorders.
Main EU files targeted
Clinical Trial Regulation, Orphan Medicinal Product Regulation, Cross-Border Healthcare Directive, Blood Directive, Transparency Directive, Public Procurement Directive
Address
Head Office
Rue de l'Industrie 10
Bruseels 1000
BELGIUM -
People
Total lobbyists declared
6
Employment time Lobbyists 100% 4 50% 2 Lobbyists (Full time equivalent)
5
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
5 accreditations were / are live (in bold) for the selected state of 17 Jan 2018
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
The EHC currently has 4 FTE staff and two part time staff. The EHC also works with 3-6 paid external consultants per year who provide support in the areas of accounting, event management, public affairs and communications. The rest of the substantive work is carried out by an extensive team of dedicated volunteers, including 7 volunteer members of the Steering Committee and 4 volunteer members of the Medical Advisory Group as well as volunteer members of 2-3 committees and working groups.
Person in charge of EU relations
Ms Amanda Bok (CEO)
Person with legal responsibility
Ms Amanda Bok (CEO)
-
Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
-
Networking
Affiliation
Eurordis
European Patients' Forum (EPF)Member organisations
None declared
-
Financial Data
Closed financial year
Jan 2016 - Dec 2016
Lobbying costs for closed financial year
250,000€
Other financial info
RE: Option II this includes all operational expenses + all personnel expenses + Round Table expenses
-
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
None
Communication activities
Round Tables of Stakeholders, advocacy campaigns, representation with the European Commission, European Parliament and European Medicines Agency
Other activities
- Three Round Tables of Stakeholders, two of which held in the European Parliament and hosted by at least two MEPs
- 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 trainings
- 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 create 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.
Meetings
Meetings
None declared