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

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

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

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