Latest
FILTER BY CATEGORY
FILTER BY TAG
Select some options
The 2nd International Conference on Clinical Research Networks (CRNs), organised by European Rare Diseases Research Alliance (ERDERA), Rare Disease International (RDI) and International Rare Diseases Research Consortium (IRDiRC), brought together the global rare disease community to advance innovative clinical research solutions, with a special focus on low- and middle-income countries (LMICs).
The European Rare Diseases Research Alliance (ERDERA), together with the European Reference Networks (ERNs), provides the missing operational layer required to implement the European Biotech Act across the full innovation pathway —from discovery to patient access.
Pre-announcement describing scope, eligibility and indicative timeline for the ERDERA Clinical Trial Call 2026, expected to open on 1 July 2026.
Budget example showing low and high cost ranges for a Phase 1 rare disease clinical trial with twenty subjects.
Call text draft setting out rules, eligibility and staged application process for the ERDERA Clinical Trial Call 2026. [ERDERA_Cli...t_20260603 | PDF]
This BMC Medical Ethics article examines ethics and regulatory guidance across EJP RD-funded rare disease research projects.
Children, Young People and Family Involvement and Engagement Strategy 2024-2029
Public involvement positively shapes research. By sharing their time and personal experiences with researchers, members of the public can influence what research takes place, how it’s carried out, and how the results are shared.
As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored.