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
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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)
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
None declared
Member organisations
None declared
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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.
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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)
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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)
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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)
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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)
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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)
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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)
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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)
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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)
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Date 14 Feb 2019 Location Brussels, Belgium Subject courtesy visit, presentation of activities DG Health and Food Safety Attending - Anne Bucher (Director-General)
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Date 15 May 2018 Location Brussels Subject HTA Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Annika Nowak (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
Other Lobbyists - European Federation of Allergy and Airways Diseases Patients' Associations
- Stichting Health Action International
- International Diabetes Federation European Region
- ASDM Consulting
- European Public Health Alliance
- European Cancer Patient Coalition
- European Patients' Forum (EPF)
- Bureau Européen des Unions de Consommateurs
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Date 28 Feb 2018 Location Brussels Subject European Reference Networks Cabinet Cabinet of Commissioner Vytenis Andriukaitis Portfolio Health & Food Safety Attending - Vytenis Andriukaitis (Commissioner)
- Annika Nowak (Cabinet member)
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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 & Food Safety Attending - Paula Duarte Gaspar (Cabinet member)
- Vytenis Andriukaitis (Commissioner)
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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 & Food Safety Attending - Annika Nowak (Cabinet member)
- Paula Duarte Gaspar (Cabinet member)
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Date 08 Oct 2015 Location Lisbon, Portugal Subject Patient perspective and involvement DG Health and Food Safety Attending - Xavier Prats Monné (Director-General)
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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 & Food Safety Attending - Vytenis Andriukaitis (Commissioner)
- Paula Duarte Gaspar (Cabinet member)
- Meetings