About FEDERG

Strategic Plan 2026–2029

Remaining a leading patient advocacy force in the rare renal disease community across Europe.

Three pillars

  • Diagnosis. Promote early and accurate detection, support genomic diagnostic initiatives and work with projects such as ERDERA on unmet diagnostic needs.
  • Treatment. Advocate for fair access to current and emerging therapies, including gene and genomic-based treatments.
  • Research. Take part in European research and make sure patients shape research priorities, ethics and dissemination.

Objectives

  1. Strengthen collaboration with ERKNet as a primary patient representative.
  2. Influence European health policy on regulation and funding for rare renal disease research and therapies.
  3. Promote innovation in gene therapy, genomic medicine and other advanced treatments.
  4. Expand patient representation, with more diversity and expertise among advocates.
  5. Raise awareness of unmet needs and patient-centred policy.

Timeline

Period Focus
2026–2027 Build partnerships with ERKNet, ERDERA and other consortia. Map unmet needs.
2027–2028 Advocate for policies supporting gene and genomic therapies. Pilot research collaborations.
2028–2029 Consolidate outcomes and bring patient perspectives into European regulation.