Overview
Lobbying Costs
750,000€
Financial year: Jan 2015 - Dec 2015
Lobbyists (Full time equivalent)
8 Fte (8)
Lobbyists with EP accreditation
3
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, Council Recommendations, Cross Border Healthcare Directive and other relevant pieces of legislation), in the Commission Expert Group on Rare Diseases (CEGRD) and in the follow-up of National Plans/Strategies on RD.Main EU files targeted
- The EU Public Health Programme 2014-2020: “Health for Growth” in general, with specific focus on issues relevant to the EU strategy on Rare Diseases
- The EU Research Programme 2014-2020: “Horizon 2020” in general, with particular focus on projects and EU collaboration relevant to the Rare Diseases field.
Main EU initiatives covered by EURORDIS and relevant to the activities falling under the scope of the Transparency Register include:
- 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), the discussions around differential pricing, Joint Procurement, Managed Entry Agreements, EU cooperation on HTA;
- Follow-up on the implementation of the Directive on Patient’s Rights in Cross Border Healthcare (CBHC)
- All areas of implementation of the Commission Communication and Council Recommendations in the field of Rare Diseases
- 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, in the framework of the EC-funded project EUROPLAN.
- Contributing to the long-term governance of rare disease strategy and policies: patient representatives have been appointed to the Commission Expert Group on Rare Diseases (CEGRD) and attended and will continue to attend the meetings and workshops of this expert group.
- Activities around the promotion of Rare Disease research priorities, patients’ registries and bio-banks.
- Active participation to the discussion around the implementation of the revised Clinical Trials Directive and the Personal Data Protection Directive.
- Participation to the emerging debate on genetic testing and fight against genetic discrimination.Address
Head Office
rue Didot, 96
Plateforme Maladies Rares
Paris 75014
FRANCEEU Office
Avenue Louise 149/24
EURORDIS
Bruxelles 1050
BELGIUM -
People
Total lobbyists declared
8
Employment time Lobbyists 100% 8 Lobbyists (Full time equivalent)
8
Lobbyists with EP accreditation
All Lobbyists with EP accreditation over time
3 accreditations were / are live (in bold) for the selected state of 08 Apr 2016
Name Start date End Date Solene JOUAN 27 Sep 2023 26 Sep 2024 Julie Céline PERNET 09 Feb 2024 07 Feb 2025 Jelena MALININA 15 Sep 2023 13 Sep 2024 Simone Boselli 15 Sep 2023 13 Sep 2024 Yann LE CAM 15 Sep 2023 13 Sep 2024 Valentina BOTTARELLI 15 Sep 2023 13 Sep 2024 Ms Julie Céline PERNET 09 Feb 2024 15 Apr 2024 Ms Solene JOUAN 27 Sep 2023 15 Apr 2024 Ms Jelena Malinina 15 Sep 2023 15 Apr 2024 Mr Simone Boselli 15 Sep 2023 15 Apr 2024 Mr Yann LE CAM 15 Sep 2023 15 Apr 2024 Ms Valentina BOTTARELLI 15 Sep 2023 15 Apr 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
List of people officially representing EURORDIS at the EMA, EUCERD, as Board members or from the EU Public Affairs office based in Brussels.
Person in charge of EU relations
Ms Valentina Bottarelli (Head of European and International Advocacy)
Person with legal responsibility
Mr Yann LE CAM (Chief Executive Officer)
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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
- EUROPEAN PATIENT FORUM (EPF)
- PAN-EUROPEAN BLOOD SAFETY ALLIANCE (PBSA)
- PLASMA PROTEIN USERS GROUP (PPUG)
- PLASMA PROTEIN THERAPEUTICS ASSOCIATION (PPTA)
- EUROPEAN ALLIANCE FOR PERSONALISED MEDICINES (EAPM), Observer
- INTERNATIONAL CONFERENCE ON RARE DISEASES AND ORPHAN DRUGS (ICORD)
- INTERNATIONAL ALLIANCE OF PATIENT ORGANISATIONS (IAPO)
- INTERNATIONAL FEDERATION OF SOCIAL WORKERS (IFSW)
- EUROPEAN FORUM FOR GOOD CLINICAL PRACTICES (EFGCP)
- EUROPEAN PLATFORM FOR PATIENT ORGANISATIONS, SCIENCE AND INDUSTRY (EPPOSI)
- DRUG INFORMATION ASSOCIATION (DIA)
- SOCIAL PLATFORMMember organisations
None declared
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Financial Data
Closed financial year
Jan 2015 - Dec 2015
Lobbying costs for closed financial year
750,000€
EU grant income for closed financial year
1,504,585 € (Source: DG SANTE HEALTH PROGRAMME, DG RESEARCH H2020, IMI-JU, DG EMPLOYMENT)
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 SANTE's rules regarding applicants to Operating Grants. -
EU Structures
Groups (European Commission)
Commission Expert Group on Rare Diseases (CEGRD)
ACC
None
Groups (European Parliament)
None
Communication activities
All areas for implementation of the above-mentioned initiatives, policies and pieces of legislation represent areas of interest for EURORDIS and its Members and therefore EURORDIS is potentially called to act upon all these relevant files together with other stakeholders involved in the Rare Diseases fields, such as EU decisional makers, national authorities, private sector, Healthcare Professionals, HTA bodies, payers and regulators at both EU and national levels.
EURORDIS is the main organiser of the European Conference on Rare Diseases and Orphan Medicinal Products.Other activities
Main EU initiatives covered last year (2012-2013) by activities falling under the scope of the Transparency Register include:
- Promoting better quality and access to healthcare services: Continued and successful discussions to promote the transposition at national level of the EU Directive on Cross-Border Healthcare
- Improving access to orphan drugs: Actions to support the implementation of EURORDIS’ proposal for European collaboration on common assessment of the Clinical Added Value of Orphan Medicinal Products (CAVOMP), the Mechanism of Coordinated Access to OMPs (MoCA), the Adaptive licensing or progressive patients’ access, and the debate on the differential pricing approach.
- 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, in the framework of the EC-funded project EUROPLAN.
- Contributing to the long-term governance of rare disease strategy and policies: patient representatives have been appointed to the EU Committee of Experts on Rare Diseases (EUCERD) and attended and will continue to attend the meetings and workshops of this expert group.
- Activities around the promotion of Rare Disease research priorities, patients’ registries and bio-banks.
- Active participation to the revision of the Clinical Trials Directive, the Transparency Directive and the Personal Data Protection Directive.
- Participation to the emerging debate on genetic testing and fight against genetic discrimination.
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 - Stella Kyriakides (Commissioner)
- Karolina Herbout-Borczak (Cabinet member)
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 - Vytenis Andriukaitis (Commissioner)
- Annika Nowak (Cabinet member)
Other Lobbyists - Stichting Health Action International
- European Federation of Allergy and Airways Diseases Patients' Associations
- ASDM Consulting
- International Diabetes Federation European Region
- 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 - Paula Duarte Gaspar (Cabinet member)
- Annika Nowak (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)