EUROPEAN ORGANISATION FOR RARE DISEASES
EURORDIS
EURORDIS-Rare Diseases Europe is a patient-driven alliance of over 1104 patient organisations (POs) active in the field of rare diseases (RD) from 75 countries.
Lobbying Activity
Meeting with Nicolás González Casares (Member of the European Parliament, Rapporteur)
6 Nov 2025 · Rare Diseases
Meeting with Olivér Várhelyi (Commissioner) and
2 Oct 2025 · All pressing portfolio topics
Meeting with Maya Matthews (Head of Unit Health and Food Safety)
29 Sept 2025 · Involvement of individual experts, including patients, taking part in joint clinical assessments and scientific consultations under the EU HTA Regulation, as well as capacity-building activities funded by the EU4Health
Meeting with Olivér Várhelyi (Commissioner) and
15 Jul 2025 · Ongoing policy developments
Meeting with Donata Meroni (Head of Unit Health and Food Safety)
26 Mar 2025 · Exchange of views on Cross-Border Healthcare and on patient organisations, EURORDIS and ERNs
Meeting with Donata Meroni (Head of Unit Health and Food Safety)
5 Mar 2025 · Exchange of views on the role of patient organizations with the European Reference Networks.
Meeting with Isabel Wiseler-Lima (Member of the European Parliament) and ALAN asbl-Maladies Rares Luxembourg
5 Mar 2025 · Rare Disease Day
Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament) and
15 Jan 2025 · Intergroup on cancer and rare diseases
Meeting with Stine Bosse (Member of the European Parliament) and DSW (Deutsche Stiftung Weltbevoelkerung)
5 Dec 2024 · European health policy
Meeting with Lynn Boylan (Member of the European Parliament)
20 Nov 2024 · Rare Diseases Week
Meeting with Olivier Chastel (Member of the European Parliament)
20 Nov 2024 · Politique de santé de l Union européenne
Meeting with Margarita De La Pisa Carrión (Member of the European Parliament)
20 Nov 2024 · Enfermedades Raras
Meeting with Pál Szekeres (Member of the European Parliament)
19 Nov 2024 · Rare Disease Week 2024
Meeting with Dolors Montserrat (Member of the European Parliament)
19 Nov 2024 · Rare Diseases incidence in Europe
Meeting with Estelle Ceulemans (Member of the European Parliament)
19 Nov 2024 · Dossier SANT à venir
Meeting with Vytenis Povilas Andriukaitis (Member of the European Parliament) and FGS Global (Europe) GmbH
19 Nov 2024 · EU health policy
Meeting with Tilly Metz (Member of the European Parliament)
19 Nov 2024 · Rare diseases
Meeting with Billy Kelleher (Member of the European Parliament)
19 Nov 2024 · Rare disease policy
Meeting with Radan Kanev (Member of the European Parliament)
19 Nov 2024 · EU Policy - Rare Diseases
Meeting with Tomislav Sokol (Member of the European Parliament) and
19 Nov 2024 · Health policy
Meeting with Ingeborg Ter Laak (Member of the European Parliament)
19 Nov 2024 · Rare diseases
Meeting with Elena Nevado Del Campo (Member of the European Parliament)
19 Nov 2024 · Rare Diseases in Europe
Meeting with Stine Bosse (Member of the European Parliament, Committee chair)
8 Oct 2024 · European health policy
Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament)
17 Sept 2024 · Introductory Meeting
Meeting with Tomislav Sokol (Member of the European Parliament) and MEDICINES FOR EUROPE
17 Sept 2024 · Health policy
Meeting with Stella Kyriakides (Commissioner) and
23 Jul 2024 · Meeting with EURORDIS to discuss the Commission’s actions on rare diseases
Meeting with Frédérique Ries (Member of the European Parliament, Shadow rapporteur) and Acumen Public Affairs
7 Mar 2024 · Revision of the Pharmaceutical Legislation
Meeting with Stelios Kympouropoulos (Member of the European Parliament)
21 Feb 2024 · rare diseases
Meeting with Helena Dalli (Commissioner)
21 Feb 2024 · Meeting with National Alliance for Rare Diseases Support Malta to discuss women's health matters.
Meeting with Tilly Metz (Member of the European Parliament, Shadow rapporteur)
8 Feb 2024 · Pharmaceutical legislation
Meeting with Frédérique Ries (Member of the European Parliament, Shadow rapporteur)
7 Feb 2024 · Revision of the Pharmaceutical Legislation
Meeting with Stella Kyriakides (Commissioner) and
29 Jan 2024 · Exchange of views on the ongoing EU actions on rare diseases
Meeting with Pernille Weiss-Ehler (Member of the European Parliament, Rapporteur)
11 Jan 2024 · Directive on Medicinal products for human use
Meeting with Pernille Weiss-Ehler (Member of the European Parliament, Rapporteur) and Novo Nordisk A/S
30 Nov 2023 · Directive on Medicinal products for human use
Meeting with Frédérique Ries (Member of the European Parliament, Shadow rapporteur)
28 Nov 2023 · Revision of the Pharmaceutical Legislation
Meeting with Ville Niinistö (Member of the European Parliament, Shadow rapporteur for opinion)
22 Nov 2023 · Reform of the EU pharmaceutical legislation
Meeting with Catherine Amalric (Member of the European Parliament, Shadow rapporteur)
26 Oct 2023 · Reform of the EU pharmaceutical legislation
Meeting with Laura Ballarín Cereza (Member of the European Parliament, Shadow rapporteur for opinion)
13 Oct 2023 · Pharmaceutical Package
Meeting with Pernille Weiss-Ehler (Member of the European Parliament, Rapporteur) and Gilead Sciences
5 Oct 2023 · Directive on Medicinal products for human use
Meeting with Stella Kyriakides (Commissioner) and
28 Sept 2023 · Meeting of Commissioner Kyriakides with newborn screening associations
Meeting with Deirdre Clune (Member of the European Parliament)
28 Jun 2023 · Rare Diseases
Meeting with Giorgos Rossides (Cabinet of Commissioner Stella Kyriakides), Karolina Herbout-Borczak (Cabinet of Commissioner Stella Kyriakides)
31 May 2023 · Exchange of views on the pharmaceutical reform
Meeting with Deirdre Clune (Member of the European Parliament)
31 May 2023 · Rare Diseases & Neonatal Screening
Response to Commission Communication on a comprehensive approach to mental health
14 Feb 2023
Meeting with Tilly Metz (Member of the European Parliament)
8 Feb 2023 · rare Diseases
Meeting with Andrey Kovatchev (Member of the European Parliament, Rapporteur for opinion)
7 Feb 2023 · European Health Data Space and Rare disease patients' concerns
Meeting with Deirdre Clune (Member of the European Parliament)
7 Feb 2023 · Rare Disease Week
Meeting with Dolors Montserrat (Member of the European Parliament, Rapporteur)
11 Jan 2023 · Lessons learned on impact of COVID-19 pandemic
Meeting with Stella Kyriakides (Commissioner) and
6 Dec 2022 · Meeting with representatives of Eurordis
Meeting with Andrey Kovatchev (Member of the European Parliament, Rapporteur for opinion)
25 Oct 2022 · European Health Data Space and Rare disease patients' concerns
Meeting with Stella Kyriakides (Commissioner) and
21 Sept 2022 · Rare diseases
Meeting with Sirpa Pietikäinen (Member of the European Parliament, Rapporteur)
10 Mar 2022 · EU Care Strategy
Meeting with Helena Dalli (Commissioner) and
26 Jan 2022 · 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.
Meeting with Margaritis Schinas (Vice-President) and
2 Dec 2021 · Rare diseases
Meeting with Giorgos Rossides (Cabinet of Commissioner Stella Kyriakides) and
25 Nov 2021 · Follow up to Cssr Kyriakides’ meeting with CSOs on 25/10/2021 on civil society funding through EU4Health
Meeting with Stella Kyriakides (Commissioner) and
25 Oct 2021 · VTC Meeting: EU4Health Work Programme 2022 and operating grants.
Meeting with Stella Kyriakides (Commissioner) and
30 Jul 2021 · Meeting with civil society representatives regarding the EU4health programme.
Meeting with Karolina Herbout-Borczak (Cabinet of Commissioner Stella Kyriakides)
17 Jun 2021 · 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
Response to Evaluation and Revision of Regulation (EC) No 726/2004 and Directive 2001/83/EC
27 Apr 2021
Response to Proposal for an EP and Council Regulation on orphan and paediatric medicinal products
6 Jan 2021
Response to Legislative framework for the governance of common European data spaces
31 Jul 2020
Meeting with Olympia Neocleous (Cabinet of Commissioner Stella Kyriakides)
14 Feb 2020 · Health Technology Assessment, Rare Diseases
Meeting with Stella Kyriakides (Commissioner) and
20 Jan 2020 · Discussion on cancer
Meeting with Anne Bucher (Director-General Health and Food Safety)
21 Oct 2019 · the Regulation for a European Cooperation on Health Technology Assessment.
Meeting with Anne Bucher (Director-General Health and Food Safety)
14 Feb 2019 · courtesy visit, presentation of activities
Response to Commission Recommendation on the European Electronic Health Record (EHR) Exchange Format
20 Dec 2018
Meeting with Vytenis Andriukaitis (Commissioner) and
15 May 2018 · HTA
Meeting with Vytenis Andriukaitis (Commissioner) and
28 Feb 2018 · European Reference Networks
Meeting with Vytenis Andriukaitis (Commissioner) and
24 Feb 2016 · Improving access to orphan medicinal products and other rare disease therapies; European Reference Networks
Meeting with Annika Nowak (Cabinet of Commissioner Vytenis Andriukaitis), Paula Duarte Gaspar (Cabinet of Commissioner Vytenis Andriukaitis)
9 Dec 2015 · European Reference Networks in the field of rare diseases; improving access to orphan drugs; platform on rare disease registration
Meeting with Xavier Prats Monné (Director-General Health and Food Safety)
8 Oct 2015 · Patient perspective and involvement
Meeting with Vytenis Andriukaitis (Commissioner) and
24 Feb 2015 · Action on rare diseases, Bridging Inequalities & Giving Patients with Rare Diseases same type of access to treatment and care