Enabling rare disease researchers to access multidisciplinary expertise, improve project quality, and accelerate innovation from bench to bedside.
Expertise Services Hub
The ERDERA Expertise Service Hub (ESH) provides a central access point for researchers involved in ERDERA actions (CRN members, ERDERA funded-projects applicants) to obtain expert support across key domains of translational research.
It brings together three complementary services — mentoring, regulatory support, and methodological support— to help projects advance efficiently from discovery to clinical implementation.
Mentoring
Connecting researchers with experienced mentors who guide project design, regulatory preparedness, and innovation strategy, ensuring alignment with translational objectives.
Regulatory and Ethics
Offering multi-specialistic expertise on regulatory roadmaps, and integration of ethical compliance throughout the research process for smooth clinical implementation and addressing patient needs.
Methodology Services
Strengthening research quality through expert guidance on clinical trial design, epidemiology, real-world data use, and advanced analytics.
Consultancy Services
Work is ongoing to set up an on-demand ERDERA Consultancy service, which aims to provide the entire RD research community with support tailored to their needs in various areas, including ethics and regulations, clinical studies, data quality and governance, patient and public involvement, etc.
A cross-cutting approach
Patient and public involvement and engagement (PPIE)
Patients, carers and patient organisations help shape ERDERA activities from planning to communication. Their input supports inclusive, responsible work and helps ensure services reflect lived experience and real-world needs in rare diseases.
Integrating Data Schemes
Resources such as datasets, patient registries, guidelines and biobanks are made available to the Virtual Platform through metadata that follow the provided metadata schemas.
Public-Private Accelerator
The Public–Private Accelerator supports engagement between ERDERA and private-sector partners where it adds value. It helps enable appropriate collaboration, clarify routes for engagement, and connect projects with expertise and capabilities needed for translation.
Mapping the Research Needs
Help ERDERA mapping the needs of the RD research community and creating dedicated support services by answering to the survey here.
The curated catalogue of services and experts will be released by the end of August 2027.
A pilot study for assessing the efficiency and implementation of consultancy services will be conducted until the end of the project on selected ERDERA funded projects.
So far a survey Exploring RD Researchers’ Needs for Consultancy Services has been launched to pinpoint the areas where rare diseases projects most often encounter challenges and where targeted expert support can help accelerate progress toward robust and timely scientific results. The consultation covers topics such as ethics and regulatory aspects, clinical studies, data quality and governance, patient and public involvement, intellectual property, innovation management and operational activities related to study start-up.
The survey results will guide the development of ERDERA consultancy services and help ensuring their long-term sustainability. All responses will be handled confidentially, and results will be shared publicly only in aggregated form.
Practical Resources
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Explore connected resources via an interactive interface that visually represents relationships between datasets, samples, and research projects.
Contact the Expertise Services Hub
Get in touch with our pool of experts.
FAQ Section
Useful when looking for something specific or attempting to navigate processes.
Consultancy
Aiming to provide on-demand, fee-based expert input to address specific scientific, ethical, or strategic challenges, supported by a curated catalogue of experts and services.
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