ERICA – EUROPEAN RARE DISEASE RESEARCH COORDINATION AND SUPPORT ACTION

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.

More information here

EURR-BONE – EUROPEAN REGISTRY FOR RARE BONE AND MINERAL CONDITIONS

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.

More information here

CEF TELECOM

ERN BOND implements measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases with the overall goal to develop innovative care models and improve cross border care for patients suffering from these rare diseases.

The main objective of this ongoing Action 2020-IT-IA-0283 is to continue to support members of ERN BOND to ensure adequate and efficient use of the ERN Core Service Platforms (i.e., the European Reference Networks Collaborative Platform and the Clinical Patient Management System) and to implement initiatives for the management and improvement of the ERN education and training programme.

This Action builds upon the CEF-funded Action 2017-IT-IA-0062 which aimed to set up the ERN BOND operational helpdesk and the Action 2018-IT-IA-0180 that focused on the development of innovative e-learning and e-training solutions for improving and standardising the diagnostic and therapeutic approach for RBDs.

 

EJP RD – EUROPEAN JOINT PROGRAMME FOR RARE DISEASES

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.

More information here

RARE 2030

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.

 

More information here