European Haemophilia Consortium

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Registration as it was on 23 Jan 2023
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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 2021 - Dec 2021

Lobbyists (Full time equivalent)

2 Fte (4)

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
    BELGIUM
    EU Office
    Rue de la Roi 28/5
    Brussels 1000
    BELGIUM

    Website

    http://www.ehc.eu

  • People

    Total lobbyists declared

    4

    Employment timeLobbyists
    50%4

    Lobbyists (Full time equivalent)

    2

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    0 accreditations were / are live (in bold) for the selected state of 23 Jan 2023

    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 people concerned by category 9 are a mix of paid staff and volunteers.

    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

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • 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

    Jan 2021 - Dec 2021

    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

    2,138,643€

    Major funding types in closed year

    Donations, Other, Member's contribution

    Funding types "other" information

    Major contributions in closed year

    TypeNameAmount
    Contribution BioMarin 237,000€
    Contribution Roche 285,000€
    Contribution Sanofi 275,000€
    Contribution Sobi 265,000€
    Contribution Takeda 235,000€
    Contribution Volunteers time 267,000€

    Other financial info

    None declared

  • 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

    None declared

  • Meetings

    Meetings

    None declared

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