ERDERA, the European Rare Disease Research Alliance, has re-opened its survey to identify where the rare disease research community most needs external consultancy support. The goal is to translate practical insights into a focused consultancy service that helps projects overcome common bottlenecks and generate robust, timely evidence.
Launched in September 2024 and co‑funded by the European Union and participating countries and organisations, ERDERA is assessing demand for expert advice across areas such as ethics and regulatory alignment, data readiness and governance, patient and public involvement (PPIE), intellectual property and innovation management, and study start‑up operations. This expanded response window is intended to capture more diverse perspectives from researchers, clinicians, project managers, data stewards and patient partners across Europe and beyond.
“With this additional data, we expect to improve our capacity to design tailored approaches, unlocking more timely and practical support for rare disease research,” said Annalisa Landi from the Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus (Benzi Foundation), one of the ERDERA leaders behind the initiative.
Why this matters
The Exploring RD Researchers’ Needs for Consultancy Services survey will keep guiding decisions about which service areas under ERDERA should be prioritised, help define the necessary expertise profiles of external advisers, and inform how the ERDERA Expertise Services can remain sustainable beyond the partnership’s funding period.
All responses will remain confidential to the evaluation team, with aggregated findings shared publicly.
Who should respond
Investigators, research support professionals, ethics and regulatory leads, data specialists, and representatives of patient organisations involved in rare disease research.
Take part
Survey link: Exploring RD Researchers’ Needs for Consultancy Services