The partnership will coordinate national, local and European research and innovation programmes, combining research funding and implementation of research supportive activities such as training, data access infrastructures, data standards etc.

The main goal is to improve the life of patients with rare diseases by developing diagnostics and treatments for rare diseases through multidisciplinary research and innovation programmes with all relevant stakeholders. This will increase impact and uptake of research results as well as increase the visibility of EU leadership in rare diseases research.

Timeline & key documents

• More information on the partnership can be found in the draft outline of partnership proposal (February 2022).
• A first version of the Strategic Research & Innovation Agenda that will underpin the Partnership was published in Spring 2023 in the context of a public consultation. The SRIA is yet to be finalised.
• The partners involved in the European Joint Programme on Rare Diseases (EJP RD) have played an important role in the preparation of the SRIA. 
• The partnership proposal was submitted on 19 September 2023 for funding under Horizon Europe as a co-funded partnership between the European Commission, European Member States, and beyond.
• The Partnership is foreseen to start its first activities in 2024.

Contact

Commission services: RTD-RD-PARTNERSHIP@ec.europa.eu

Partners (main contact): erdera@ejprarediseases.org