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Февраль 2023

MEPs call on Commission President to deliver overdue strategy on rare diseases


Brussels, 28 February 2023 – 48 Members of the European Parliament (MEPs) have today (28 February) written to the President of the European Commission Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases to improve the lives of the 30 million European citizens living with a rare disease.

In the letter sent on Rare Disease Day (28 February), the MEPs – including many from the Network of Parliamentary Advocates for Rare Diseases – highlight the need for urgent action to address the common challenges faced by people living with a rare disease, such as delayed diagnosis, lack of access to transformative treatments, and the fragmentation in access to rare disease medicines across EU Member States.

The letter from MEPs argues that the European Commission should establish a European strategy on rare diseases, which would bridge national and European legislation, policies, and programmes across the Pharmaceutical Package, the European Health Data Space, European Reference Networks, Europe’s Beating Cancer Plan, EU4Health, Horizon Europe, the Long Term Care Strategy, the European Disability Strategy, and beyond.

Publishing the letter, the lead signatory, Frédérique Ries MEP said:

“It has been 14 years since the last comprehensive EU strategy on addressing rare diseases. The lack of joined-up action since then has meant that progress for people living with a rare condition in the EU has been disjointed, insufficient and geographically uneven. The consensus on the need for a new rare disease strategy growing ever larger, and so it is now time for the European Commission to act.”

The letter from MEPs emphasises that the European Union has a high-added value in addressing the needs of people living with a rare disease, given the rarity of patients, experts, data, and resources at the national level – as no country can tackle rare diseases alone.

However, the letter asserts that the European Union cannot achieve this value until it launches an updated and cohesive strategy aimed at improving the lives of people living with a rare disease.

Supporting and welcoming the letter, Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, said:

“EURORDIS appreciates MEPs’ continued support for a European strategy on rare diseases, and we encourage the European Commission to act swiftly to improve the lives of the millions of people living with a rare disease in Europe.

“This Rare Disease Day, our global community has been coming together to raise awareness of the actions and changes needed to achieve a more equitable world for those with a rare condition. A strategy that holistically and completely addresses people’s needs, which also includes measurable goals, would make sure all Member States work in the same direction and allow the EU to become the international exemplar of how to achieve equity for the rare disease community.”

The letter demonstrates cross-cutting political support for a rare disease strategy, with MEPs from across the European Parliament’s various political groups adding their names to the call.

Notably, the letter from MEPs cites the recommendations of Rare 2030 – a two-year study which had been initiated by the European Parliament, funded by the European Commission, and led by EURORDIS and partner organisations.

The comprehensive strategy – called for by both the Rare 2030 study and MEPs in this and previous communication – has been penned the European Action Plan for Rare Diseases. MEPs’ letter of endorsement for a European Action Plan for Rare Diseases follows the recently gathered support of 21 Member States for such a plan and reaffirms political consensus on the need for one across EU institutions, national governments, and political allegiances.


Read MEPs’ letter to Ursula von der Leyen, President of the European Commission


List of MEPs supporting the call for a European Action Plan for Rare Diseases

MEP Frédérique Ries, RE, Belgium

MEP Ewa Kopacz, EPP, Poland
MEP João Albuquerque, S&D, PortugalMEP Stelios Kympouropoulos, EPP, Greece
MEP Barry Andrews, RE, IrelandMEP Katrin Langensiepen, Greens/EFA, Germany
MEP Marc Angel, S&D, LuxembourgMEP Colm Markey, EPP, Ireland
MEP Pascal Arimont, EPP,BelgiumMEP Radka Maxová, S&D, Czechia
MEP Brando Benifei, S&D, ItalyMEP Tilly Metz, Greens/EFA, Luxembourg
MEP Izaskun Bilbao Barandica, RE, SpainMEP Alin Cristian Mituța, RE, Romania
MEP Jordi Cañas, RE, SpainMEP Dolors Montserrat, EPP, Spain
MEP Sara Cerdas, S&D PortugalMEP Juozas Olekas, S&D, Lithuania
MEP Rosanna Conte, ID, ItalyMEP Piernicola Pedicini, Greens/EFA, Italy
MEP Deirdre Clune, EPP, IrelandMEP María Soraya Rodríguez Ramos, RE, Spain
MEP Josiane Cutajar, S&D, MaltaMEP Monica Semedo, RE, Luxembourg
MEP Frances Fitzgerald, EPP, IrelandMEP Tomislav Sokol, EPP, Croatia
MEP Claudia Gamon, RE, AustriaMEP Susana Solís Perez, RE, Spain
MEP Maria da Graça Carvalho, EPP, PortugalMEP Nicolae Ştefănuță, RE, Romania
MEP Christophe Hansen, EPP, LuxembourgMEP István Ujhelyi, S&D, Hungary
MEP Adam Jarubas, EPP, PolandMEP Petar Vitanov, S&D, Bulgaria
MEP Radan Kanev, EPP, BulgariaMEP Hilde Vautmans, RE, Belgium
MEP Karin Karlsbro, RE, SwedenMEP Mick Wallace, GUE/NGL, Ireland
MEP Billy Kelleher, RE, IrelandMEP Maria Walsh, EPP, Ireland
MEP Ondřej Knotek, RE, CzechiaMEP Clare Daly, GUE/NGL, Ireland
MEP Kateřina Konečná, GUE/NGL, CzechiaMEP Peter Liese, EPP, Germany
MEP Athanasios Konstantinou, NA, GreeceMEP Isabel Wiseler-Lima, EPP, Luxembourg
MEP Alex Agius Saliba, S&D, MaltaMEP Véronique Trillet-Lenoir, RE, France
MEP Rosa Estaràs Ferragut, EPP, SpainMEP Guenther Sidl, Austria, S&D


About EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of more than 1,000 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

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.

Follow @eurordis or see the EURORDIS Facebook page. For more information, visit eurordis.org.


Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32