European Rare Disease Research Alliance (ERDERA)
The European Rare Disease Research Alliance (ERDERA) is a collaborative network that brings together researchers, healthcare professionals, patients, and policymakers from across Europe. Its main goal is to support and promote research on rare diseases, which may affect only a small number of people, but often have a big impact on their lives.
By working together, ERDERA helps to share knowledge, improve diagnosis and treatments, and ensure that people living with rare diseases are not forgotten. The alliance encourages collaboration between countries and builds strong partnerships to advance rare disease research and care across Europe.
ERDERA works in close connection with the European Reference Networks (ERNs) — groups of experts across Europe who collaborate to diagnose and treat rare and complex conditions. By linking scientific research with the clinical expertise of the ERNs, ERDERA helps ensure that new discoveries are quickly translated into real-world solutions for patients.
Together, we aim to build a stronger, more connected community, share valuable knowledge, and create real change for patients and families affected by rare diseases.
JARDIN – Joint Action for Rare Disease Integration
JARDIN is a European collaboration that brings together countries, experts, and patients to better support people living with rare diseases. Its aim is to help national health systems work more closely together, so that care for rare disease patients is better organized, more equal, and easier to access everywhere in Europe.
A key objective of JARDIN is to integrate the European Reference Networks (ERNs) into national healthcare systems, building a strong and lasting bridge between the two. This helps ensure that the knowledge and expertise developed at the European level can benefit patients in every country.
JARDIN’s mission and vision are guided by three core values: integration, equity, and sustainability. By sharing good practices, tools, and experience across Europe, JARDIN works to create a fairer and more connected system of care for people affected by rare diseases.