In a powerful show of unity, patient representatives, the European Organisation for Rare Diseases (EURORDIS), and European Reference Network (ERN) coordinators from all 24 ERNs have joined forces to publish an open letter calling for renewed and continued support for ERNs. The letter, which is addressed to the EU institutions and the governments of the EU member states, highlights the critical role that these networks play in improving the lives of people living with rare or complex conditions across Europe.
European Reference Networks connect healthcare professionals and patient representatives from different countries to share expertise and best practices. They are essential for tackling rare and complex diseases and ensuring that patients receive timely and specialized care regardless of where they live.
The open letter is a powerful reminder of the commitment of the European Union and its Member States to create a healthcare system where all people, regardless of their condition or where they live, have equal opportunities to access high quality, specialized healthcare. It underlines the need to maintain this commitment and to continue to support ERNs as a cornerstone of this vision.
At the heart of the letter is a call to action, urging EU institutions and Member States to stand by the ERNs and provide the necessary resources, funding, and infrastructure to ensure their sustainability. It highlights that the ERNs have already made significant strides in enhancing the diagnosis, treatment, and management of rare and complex conditions, leading to improved outcomes and a higher quality of life for countless patients.
Patient representatives and ERN coordinators in this letter emphasize that ERNs are not only a source of hope, but also a lifeline for individuals and families affected by rare diseases. The ERNs have facilitated cross-border collaboration, advanced research and empowered patients to become active partners in their healthcare.
The open letter acts as a call to prioritize ERNs in the health agenda and to keep the promise of equal healthcare for all Europeans living with rare or complex conditions. It highlights that continued support for the ERNs is not only an investment in healthcare, but also a commitment to human dignity and solidarity.
As a new EU political cycle approaches, it is hoped that the EU institutions and Member States will respond with a resounding commitment to uphold the European Reference Networks. By doing so, they can ensure that every person living with a rare or complex condition in Europe receives the specialized care and support they deserve, making the vision of equitable healthcare a reality.
Read the open letter here.