EUROPEAN ORGANISATION FOR RARE DISEASES

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Registration as it was on 30 Jul 2014
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Overview

Lobbying Costs

3,875,000€

Financial year: Jan 2013 - Dec 2013

Lobbyists (Full time equivalent)

None declared

Lobbyists with EP accreditation

0

High-level Commission meetings

20

Lobbying Costs over the years

  • Info

    EUROPEAN ORGANISATION FOR RARE DISEASES   (EURORDIS)

    EU Transparency Register

    93272076510-87 First registered on 30 Aug 2011

    Goals / Remit

    EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU. EURORDIS mission is to build a strong pan-European community of POs and People Living with RD (PLWRD), to be their voice at the European level and to fight against the impact of RD on their lives.

    To this end, EURORDIS undertakes activities on behalf of its members:
    • Empowering RD patient groups
    • Advocating RD as a public health priority
    • Raising public awareness on RD
    • Improving access to information, treatment, care and support for PLWRD
    • Improving quality of life
    • Encouraging good practices in relation to these issues
    • Promoting scientific and clinical research on RD
    • Developing treatments and drugs for people with RD

    EURORDIS plays a pivotal role in the implementation of the EU strategy on RD (EC Communication and Council Recommendations), in the EU Committee of Experts on RD (EU CERD) and in the elaboration of National Plans or Strategies on RD.

    Main EU files targeted

    Address

    Head Office
    rue Didot
    Paris 75014
    FRANCE
  • People

    Total lobbyists declared

    None declared

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    0 accreditations were / are live (in bold) for the selected state of 30 Jul 2014

    Name Start date End Date
    Ms Julie Céline PERNET 09 Feb 2024 07 Feb 2025
    Ms Solene JOUAN 27 Sep 2023 26 Sep 2024
    Ms Jelena Malinina 15 Sep 2023 13 Sep 2024
    Mr Simone Boselli 15 Sep 2023 13 Sep 2024
    Mr Yann LE CAM 15 Sep 2023 13 Sep 2024
    Ms Valentina BOTTARELLI 15 Sep 2023 13 Sep 2024
    Ms Julie Céline PERNET 01 Mar 2023 09 Feb 2024
    Ms Jelena Malinina 22 Sep 2022 15 Sep 2023
    Mr Simone Boselli 22 Sep 2022 15 Sep 2023
    Mr Yann LE CAM 22 Sep 2022 15 Sep 2023
    Ms Valentina BOTTARELLI 22 Sep 2022 15 Sep 2023
    Ms Julie Céline PERNET 19 Feb 2022 18 Feb 2023
    Mr Yann LE CAM 18 Nov 2021 22 Sep 2022
    Mr Simone Boselli 17 Nov 2021 22 Sep 2022
    Ms Valentina BOTTARELLI 17 Nov 2021 22 Sep 2022
    Mr Konstantinos ALIGIANNIS 24 Jan 2020 01 Feb 2021
    Ms Karolina HANSLIK 17 Jan 2020 01 Feb 2021
    Ms Clara Hervas 06 Dec 2019 01 Dec 2020
    Mr Yann LE CAM 20 Nov 2019 01 Dec 2020
    Ms Valentina BOTTARELLI 18 Oct 2019 17 Oct 2020
    Mr Simone Boselli 12 Sep 2019 01 Oct 2020
    Mr Yann LE CAM 21 Nov 2018 20 Nov 2019
    Ms Clara Hervas 06 Nov 2018 06 Nov 2019
    Ms Valentina BOTTARELLI 16 Oct 2018 18 Oct 2019
    Mr Simone Boselli 19 May 2018 18 May 2019
    Mr François Houyez 08 May 2018 01 May 2019
    Mr Yann LE CAM 22 Nov 2017 21 Nov 2018
    Ms Clara Hervas 20 Nov 2017 06 Nov 2018
    Ms Valentina BOTTARELLI 05 Oct 2017 29 Sep 2018
    Mr Simone Boselli 17 May 2017 16 May 2018
    Mr François Houyez 21 Feb 2017 21 Feb 2018
    Mr Yann LE CAM 23 Jan 2017 22 Nov 2017
    Ms Clara Hervas 23 Jan 2017 20 Nov 2017
    Ms Valentina BOTTARELLI 30 Sep 2016 23 Sep 2017
    Mr Jean Louis ROUX 30 Sep 2016 17 May 2017
    Mr Yann LE CAM 16 Oct 2015 14 Oct 2016
    Mr Jean Louis ROUX 09 Oct 2015 01 Oct 2016
    Ms Valentina BOTTARELLI 02 Oct 2015 30 Sep 2016
    Ms Jennifer STEELE 01 Oct 2015 29 Mar 2016

    Complementary Information

    None declared

    Person in charge of EU relations

    None declared

    Person with legal responsibility

    Mrs Flaminia Macchia (European Public Affairs Director)

  • Categories

    Category

    III - Non-governmental organisations

    Subcategory

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    None declared

    Member organisations

    None declared

  • Financial Data

    Closed financial year

    Jan 2013 - Dec 2013

    Lobbying costs for closed financial year

    3,875,000€

    EU grant income for closed financial year

    1,101,444 €

    Other financial info

    EURORDIS has set a number of rules to avoid conflict of interest with Health's sector corporates. It is published on its website (EURORDIS Policy on Financial Support by Commercial Companies).
    All donations are listed under the section "Financial information and Funding".
    EURORDIS representatives to EMA must fulfill the EMA's Conflict of Interest rules.
    EURORDIS must also fulfill the DG Sanco's rules regarding applicants to Operating Grants.

  • EU Structures

    Groups (European Commission)

    None declared

    Groups (European Parliament)

    None declared

    Communication activities

    None declared

    Other activities

    None declared

  • Meetings

    Meetings

    20 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.

    • Date 21 Feb 2024 Location Brussels
      Subject Meeting with National Alliance for Rare Diseases Support Malta to discuss women's health matters.
      Cabinet Cabinet of Commissioner Helena Dalli
      Attending
      • Helena Dalli (Commissioner)
    • Date 29 Jan 2024 Location Brussels
      Subject Exchange of views on the ongoing EU actions on rare diseases
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Attending
      • Karolina Herbout-Borczak (Cabinet member)
      • Stella Kyriakides (Commissioner)
    • Date 28 Sep 2023 Location Brussels
      Subject Meeting of Commissioner Kyriakides with newborn screening associations
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Karolina Herbout-Borczak (Cabinet member)
      • Stella Kyriakides (Commissioner)
      Other Lobbyists
    • Date 31 May 2023 Location Brussels
      Subject Exchange of views on the pharmaceutical reform
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Giorgios Rossides (Cabinet member)
      • Karolina Herbout-Borczak (Cabinet member)
    • Date 26 Jan 2022 Location Online - Brussels
      Subject Discussion on the Commissioner work programme related to rare diseases as well as the continued work of EURODIS, in particular its collaborative efforts with the EU's institutions.
      Cabinet Cabinet of Commissioner Helena Dalli
      Portfolio Equality
      Attending
      • Annelisa Cotone (Cabinet member)
      • Helena Dalli (Commissioner)
    • Date 02 Dec 2021 Location Brussels
      Subject Rare diseases
      Cabinet Cabinet of Vice-President Margaritis Schinas
      Portfolio Promoting the European Way of Life
      Attending
      • Margaritis Schinas (Vice-President)
      • Maria Luisa Llano Cardenal (Cabinet member)
    • Date 25 Nov 2021 Location Webex
      Subject Follow up to Cssr Kyriakides’ meeting with CSOs on 25/10/2021 on civil society funding through EU4Health
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Giorgios Rossides (Cabinet member)
      Other Lobbyists
    • Date 25 Oct 2021 Location Brussels
      Subject VTC Meeting: EU4Health Work Programme 2022 and operating grants.
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Stella Kyriakides (Commissioner)
      Other Lobbyists
    • Date 30 Jul 2021 Location Virtual meeting
      Subject Meeting with civil society representatives regarding the EU4health programme.
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Stella Kyriakides (Commissioner)
      Other Lobbyists
    • Date 17 Jun 2021 Location Brussels, virtual
      Subject Exchange of views on rare diseases in the context of the pharmaceutical strategy for Europe and the presentation of EURORDIS Recommendations of the Foresight Study on rare diseases policy
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Karolina Herbout-Borczak (Cabinet member)
    • Date 14 Feb 2020 Location Brussels, Belgium
      Subject Health Technology Assessment, Rare Diseases
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Olympia Neocleous (Cabinet member)
    • Date 20 Jan 2020 Location Brussels
      Subject Discussion on cancer
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Attending
      • Stella Kyriakides (Commissioner)
      Other Lobbyists
    • Date 21 Oct 2019 Location Brussels
      Subject the Regulation for a European Cooperation on Health Technology Assessment.
      DG Health and Food Safety
      Attending
      • Anne Bucher (Director-General)
    • Date 14 Feb 2019 Location Brussels, Belgium
      Subject courtesy visit, presentation of activities
      DG Health and Food Safety
      Attending
      • Anne Bucher (Director-General)
    • Date 15 May 2018 Location Brussels
      Subject HTA
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Annika Nowak (Cabinet member)
      • Vytenis Andriukaitis (Commissioner)
      Other Lobbyists
    • Date 28 Feb 2018 Location Brussels
      Subject European Reference Networks
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Vytenis Andriukaitis (Commissioner)
      • Annika Nowak (Cabinet member)
    • Date 24 Feb 2016 Location Brussels
      Subject Improving access to orphan medicinal products and other rare disease therapies; European Reference Networks
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Paula Duarte Gaspar (Cabinet member)
      • Vytenis Andriukaitis (Commissioner)
    • Date 09 Dec 2015 Location Brussels
      Subject European Reference Networks in the field of rare diseases; improving access to orphan drugs; platform on rare disease registration
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Annika Nowak (Cabinet member)
      • Paula Duarte Gaspar (Cabinet member)
    • Date 08 Oct 2015 Location Lisbon, Portugal
      Subject Patient perspective and involvement
      DG Health and Food Safety
      Attending
      • Xavier Prats Monné (Director-General)
    • Date 24 Feb 2015 Location Brussels
      Subject Action on rare diseases, Bridging Inequalities & Giving Patients with Rare Diseases same type of access to treatment and care
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Attending
      • Vytenis Andriukaitis (Commissioner)
      • Paula Duarte Gaspar (Cabinet member)
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