EUROPEAN ORGANISATION FOR RARE DISEASES

Tweet this page
<
2011
2012
2013
2014
2015
2016
2017
2018
2019
2020
2021
2022
>
Registration as it was on 13 May 2022
How to read and use this data card.
Download this datacard

Overview

Lobbying Costs

800,000€ - 899,999€

Financial year: Jan 2020 - Dec 2020

Lobbyists (Full time equivalent)

10 Fte (17)

Lobbyists with EP accreditation

8

High-level Commission meetings

16

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-Rare Diseases Europe is a patient-driven alliance of over 962 patient organisations (POs) active in the field of rare diseases (RD) from 73 countries. It represents the voice of an estimated 30 million citizens in the EU. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
    EURORDIS vision is to enable better lives and cures for people living with a rare disease and its mission is to work across borders and diseases to improve the lives of people living with a rare disease. To this end, EURORDIS-Rare Diseases Europe undertakes activities on behalf of its members:
    • Raising public awareness on RD
    • Empowering PLWRD and RD patient groups and strengthening the capacity of rare disease patients’ representatives • Advocating for RD as a public health priority and for national and EU-level (...)

    Main EU files targeted

    - The EU4Health Programme in general, with specific focus on issues relevant to the EU strategy on Rare Diseases. – The EU Research Programme 2021-2027: “Horizon Europe” in general, with particular focus on projects and EU collaboration relevant to the Rare Diseases field.- ESF+ and the EASI Programme by DG Employment and Social Affairs, with particular focus on social care.

    Main EU initiatives covered by EURORDIS-Rare Diseases Europe and relevant to the activities falling under the scope of the Transparency Register include:- Contributions to the Pharmaceutical Strategy for Europe and to the revision of the legislation for special populations: Regulation (EC) No 141/2000 on Orphan Medicinal Products (OMP) and Paediatric Regulation (EC) No 1901/2006; - Initiatives aimed at improving access to Orphan Medicinal Products (OMPs), such as the Mechanism of Coordinated Access to OMPs (the so-called MoCA initiative), the Medicine Adaptive Pathways to Patients (MAPPs), linked to the optimal use of the existing EU regulatory framework (conditional approval, exceptional circumstances, Risk/Benefit Management plans), Commission Expert Group on Safe and Timely Access to Medicines for Patients ("STAMP"), the discussions around differential pricing, Joint Procurement, Managed Entry Agreements, Compassionate use programmes, off-label use, shortages of medicines; - Proposal for a Regulation on health technology assessment (HTA) and amending Directive 2011/24/EU; - Follow-up on the implementation and the evaluation of the Directive 2011/24/EU on Patient’s Rights in Cross Border Healthcare (CBHC), particularly on the creation of European Reference Networks (ERNs); - Promoting work in all areas of implementation of the Commission Communication and Council Recommendations in the field of Rare Diseases; - Leading the ongoing work to shape the EU rare disease policy agenda, notably through the bi-annual European Conference on Rare Diseases, the main rare disease policy conference in Europe, co-funded by the European Commission; and through the leadership of the Pilot Project “Rare2030 –Foresight in Rare Disease Policy”, a collective reflection on rare disease policy in Europe through the next ten years and beyond, that culminated with the adoption of overarching Rare 2030 policy recommendations (February 2021); - Promoting national plans and strategies across Europe including National Conferences on Rare Diseases organised by national rare disease alliances in partnership with national competent authorities and stakeholders; - Activities around the promotion of rare disease research priorities, patients’ registries, bio-banks and other research infrastructures, research training for patients, notably through the participation in the European Joint Programme on Rare Disease and contribution to research priority identification in Horizon Europe; - Participation to the debate on genetic testing and diagnostics; - Active participation to the discussion around the implementation of the General Data Protection Regulation; - - Contributing to the ongoing consultation on the Data Governance Act, the European Health Data Space and related legislation and policy initiatives; – contribution to public consultations and implementation of the Action Plan of the European Pillar of Social Rights; the EU Disability Strategy.

    Address

    Head Office
    rue Didot, 96 Plateforme Maladies Rares
    Paris 75014
    FRANCE
    EU Office
    rue Didot, 96 Plateforme Maladies Rares
    Paris 75014
    FRANCE

    Website

  • People

    Total lobbyists declared

    17

    Employment timeLobbyists
    100%4
    75%3
    50%5
    25%5

    Lobbyists (Full time equivalent)

    10

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    8 accreditations were / are live (in bold) for the selected state of 08 Dec 2022

    Name Start date End Date
    Ms Jelena Malinina 22 Sep 2022 21 Sep 2023
    Mr Simone Boselli 22 Sep 2022 21 Sep 2023
    Mr Yann LE CAM 22 Sep 2022 21 Sep 2023
    Ms Valentina BOTTARELLI 22 Sep 2022 21 Sep 2023
    Ms Julie Céline PERNET 19 Feb 2022 17 Feb 2023
    Mr Yann LE CAM 18 Nov 2021 17 Nov 2022
    Mr Simone Boselli 17 Nov 2021 16 Nov 2022
    Ms Valentina BOTTARELLI 17 Nov 2021 16 Nov 2022
    Mr Konstantinos ALIGIANNIS 24 Jan 2020 31 Jan 2021
    Ms Karolina HANSLIK 17 Jan 2020 31 Jan 2021
    Ms Clara Hervas 06 Dec 2019 30 Nov 2020
    Mr Yann LE CAM 20 Nov 2019 30 Nov 2020
    Ms Valentina BOTTARELLI 18 Oct 2019 16 Oct 2020
    Mr Simone Boselli 12 Sep 2019 30 Sep 2020
    Mr Yann LE CAM 21 Nov 2018 20 Nov 2019
    Ms Clara Hervas 06 Nov 2018 05 Nov 2019
    Ms Valentina BOTTARELLI 16 Oct 2018 31 Oct 2019
    Mr Simone Boselli 19 May 2018 17 May 2019
    Mr François Houyez 08 May 2018 30 Apr 2019
    Mr Yann LE CAM 22 Nov 2017 20 Nov 2018
    Ms Clara Hervas 20 Nov 2017 16 Nov 2018
    Ms Valentina BOTTARELLI 05 Oct 2017 28 Sep 2018
    Mr Simone Boselli 17 May 2017 15 May 2018
    Mr François Houyez 21 Feb 2017 20 Feb 2018
    Mr Yann LE CAM 23 Jan 2017 09 Jan 2018
    Ms Clara Hervas 23 Jan 2017 09 Jan 2018
    Ms Valentina BOTTARELLI 30 Sep 2016 22 Sep 2017
    Mr Jean Louis ROUX 30 Sep 2016 23 Sep 2017
    Mr Yann LE CAM 16 Oct 2015 14 Oct 2016
    Mr Jean Louis ROUX 09 Oct 2015 07 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

    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

    External networks:
    - EUROPEAN MEDICINES AGENCY
    - EUROPEAN COMMISSION

    European Not-for-Profit Organisations:
    - DIA
    - EUROPEAN PATIENT FORUM (EPF)
    - EUROPABIO Patients Advisory Group
    - EFPIA Think Tank: European Federation of Pharmaceutical Industries and Associations
    - EUCOPE
    - EFGCP: European Forum for Good Clinical Practice
    - FIPRA – International Policy Advisors
    - Orphanet
    - Rare Cancer Europe
    - SOCIAL PLATFORM
    - Maladies Rares Info Service (French Helpline for RDs)
    - PFMD – Patient Focused Medicines Development Initiative
    - WECAN: informal network of leaders of cancer patient umbrella organizations active in Europe
    - FRIENDS OF EUROPE

    International Institutions, Not-for-Profit Organisations & Initiatives:- NGO COMMITTEE FOR RARE DISEASES
    - NEWDIGS ADAPTIVE LICENSES
    - INTERNATIONAL ALLIANCE OF PATIENT ORGANISATIONS (IAPO)
    - IRDiRC – INTERNATIONAL RARE DISEASES RESEARCH CONSORTIUM
    - RARE DISEASES INTERNATIONAL (RDI)

    European network of parliamentarian advocate for rare diseases:
    - European parliament interest group on Rare Diseases
    - Parliamentarian advocates in national assemblies

    European networks:
    - BBMRI
    - RD-Connect
    - HTx, Next Generation HTA
    - EUPATI
    -
    - OpenMedicine
    - PARADIGM
    - C4C (Connect 4 Children)
    - CORBEL-MIUF
    - Solve-RD
    - Rare2030
    - reCOVID consortium IMI2
    - COST ACTIOPN 15105 (drug shortages)

    Partnership Learned Societies:
    • European Federation of Internal Medicine (EFIM)
    • European Hospital & Healthcare Federation (HOPE) -
    • International Federation of Social Workers Europe (IFSW-Europe)
    • European Society of Human Genetics (ESHG)
    • International Society for Pharmaco-economics and Outcomes Research (ISPOR)
    • European Connected Health
    • Alliance - ECHAlliance

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Promotes their own interests or the collective interests of their members

    Closed financial year

    Jan 2020 - Dec 2020

    Lobbying costs for closed financial year

    800,000€ - 899,999€

    Major contributions in closed year

    None declared

    Intermediaries for closed year

    None declared

    Intermediaries for current year

    None declared

    Closed year Costs

    800,000€ - 899,999€

    Other financial info

    The platform does not allow a partial update. Update must be done before 19/03/2022. Accounts are not closed. Financial information will be updated after the closing of accounts.

  • EU Structures

    Groups (European Commission)

    eHealth Stakeholder Group#E02769#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?groupID=2769 #Member #C#Civil society, Other

    Groups (European Parliament)

    N/A

    Other activities

    None declared

  • Meetings

    Meetings

    16 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 publish information about such meetings. All information below comes from European Commission web pages.

    • 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
      Commission
      • Helena Dalli (Commissioner)
      • Annelisa Cotone (Cabinet member)
    • Date 02 Dec 2021 Location Brussels
      Subject Rare diseases
      Cabinet Cabinet of Vice-President Margaritis Schinas
      Portfolio Promoting the European Way of Life
      Commission
      • Maria Luisa Llano Cardenal (Cabinet member)
      • Margaritis Schinas (Vice-President)
    • 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
      Commission
      • 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
      Commission
      • 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
      Commission
      • 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
      Commission
      • 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
      Commission
      • Olympia Neocleous (Cabinet member)
    • Date 20 Jan 2020 Location Brussels
      Subject Discussion on cancer
      Cabinet Cabinet of Commissioner Stella Kyriakides
      Portfolio Health
      Commission
      • Stella Kyriakides (Commissioner)
      Other Lobbyists
    • Date 21 Oct 2019 Location Brussels
      Subject the Regulation for a European Cooperation on Health Technology Assessment.
      Commission
      • Anne Bucher (Director-General)
    • Date 14 Feb 2019 Location Brussels, Belgium
      Subject courtesy visit, presentation of activities
      Commission
      • Anne Bucher (Director-General)
    • Date 15 May 2018 Location Brussels
      Subject HTA
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Commission
      • Vytenis Andriukaitis (Commissioner)
      • Annika Nowak (Cabinet member)
      Other Lobbyists
    • Date 28 Feb 2018 Location Brussels
      Subject European Reference Networks
      Cabinet Cabinet of Commissioner Vytenis Andriukaitis
      Portfolio Health &amp; Food Safety
      Commission
      • 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
      Commission
      • 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
      Commission
      • Annika Nowak (Cabinet member)
      • Paula Duarte Gaspar (Cabinet member)
    • Date 08 Oct 2015 Location Lisbon, Portugal
      Subject Patient perspective and involvement
      Commission
      • 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
      Commission
      • Paula Duarte Gaspar (Cabinet member)
      • Vytenis Andriukaitis (Commissioner)
Download this datacard