The  Joint Action JARDIN is an initiative under the EU4Health program aimed at integrating the European Reference Networks (ERNs) into national healthcare systems.
The primary goal of JARDIN is to enhance the impact of ERNs, which are multinational networks of highly specialized healthcare providers across Europe, addressing rare or complex low-prevalence diseases that require an exceptional concentration of expertise and resources.

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The European Rare Diseases Research Alliance (ERDERA) kicks off this September 2024, with an estimated budget of 380 million euros and the aim of improving the lives of 30 million rare disease patients in Europe and beyond.

ERDERA takes over EJPRD to deliver concrete health benefits to rare disease patients in the next decade by advancing prevention, diagnosis, and treatment research.

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The aim of the ERICA consortium, in which all 24 European Reference Networks take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

Through knowledge sharing, engagement with stakeholders in the rare disease domain and assembly of transdisciplinary research groups working across the global health spectrum, ERICA strives to reach the following goals:

• new intra- and inter-ERN rare disease competitive networks;
• effective data collection strategies;
• better patient involvement;
• enhanced quality and impact of clinical trials;
• increased awareness of ERNs innovation potential.

ERICA will strengthen research and innovation capacity by the integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and innovation. This will result in efficient access and safe therapies for the benefit of patients suffering from rare diseases and complex conditions.

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Expert centers for rare bone and mineral conditions and patient representatives have joined their forces and started the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in April 2020. This project builds upon established structures. EuRR-Bone connects with the European Registry for Rare Endocrine Diseases (EuRRECa). By doing this EuRR-Bone connects ERN BOND with Endo-ERN maximizing its outreach.

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The European Joint Programme on Rare Diseases (EJP RD) is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. We support rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high quality research into effective treatments.

EJP RD has two major objectives:

(i) To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe worldwide sharing of research and clinical data, materials, processes, knowledge and know-how;

(ii) To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients.

The EJP RD actions is organised within four major Pillars assisted by the central coordination:

(P1): Funding of research;
(P2): Coordinated access to data and services;
(P3) Capacity building;
(P4): Accelerated translation of research projects and improvement outcomes of clinical studies.

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Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. This produced recommendations on the most critical areas needing sound policy.

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