PROJECT OVERVIEW
Ambition and Mission at ERDERA
The ERDERA partnership’s ambition is to improve the health and well-being of the 30 million individuals living with rare diseases (RD) across Europe. The ultimate goal is to establish Europe as a global leader in rare disease research and innovation, facilitating tangible health benefits through enhanced prevention, diagnosis, and treatment options.
ERDERA partnership’s mission, to be accomplished by 2034, revolves around three key objectives:
- Facilitate the development of an integrated research ecosystem by unifying high-quality RD research projects under one umbrella. Leveraging cross-disciplinary expertise and streamlined study planning will ensure effective execution.
- Enhance clinical study readiness by empowering every consenting patient with a RD to be easily identified and enrolled in relevant clinical studies. Generating compliant datasets will drive advancements in diagnosis and treatment.
- Increasing investment in RD research, by aligning with regional, national, and European innovation priorities, fostering job creation and enhancing the EU’s competitiveness in research and innovation.
Our role
DDF with its extensive expertise in patient empowerment activities, data management, implementation of FAIR data principles and AI-based data modeling and analysis, will contribute in several components of the ERDERA activities, including:
- Data management plan development to ensure the accountability and reliability of the data, considering appropriate intellectual property protection and compliance with ethical rules, research integrity standards, FAIR principles, and GDPR regulations.
- Model-based clinical trial simulation platform development for DMD, to improve the understanding of disease progression patterns and help predicting the effectiveness and safety of new drugs faster.
- Data tools and services provision to prepare data for the regulatory pathway in drug development.
- Education and training programme development on RD research tailored to the needs of patients, patient advocates, young researchers and other stakeholders in the RD community.
Co-funded by the EU
ERDERA has received funding from the European Union’s Horizon Europe research and innovation programme under grant agreement N°101156595.