Beneficiaries and Participants

ERDERA BENEFICIARIES

Lives touched by a rare condition—patients, their families and the organisations that represent them—stand first in line to benefit from ERDERA’s work. By weaving patient insight into every research question, ERDERA ensures that scientific progress can turn into day-to-day improvements for the 30 million Europeans navigating life with a rare disease.

A second group of beneficiaries emerges through the partnership’s competitive funding calls. These calls open a dedicated stream of resources to universities, hospitals, small enterprises, larger industry partners and, crucially, patient advocacy groups. Each proposal must unite expertise across borders and disciplines, address a clearly defined unmet need and embed patient participation from the start. In return, they receive not only funding but also support for data stewardship, regulatory alignment and skills development—elements that help promising ideas travel further, faster.

Funding decisions follow a transparent path. An independent board of public funders agrees each call’s scope and budget; a joint secretariat coordinates timelines, peer review and ethics checks; and national agencies issue the contracts, ensuring compliance with domestic regulations while contributing to a shared European portfolio. Ring-fenced budgets for patient groups and robust conflict-of-interest safeguards keep the playing field level and the focus firmly on patient impact.