“Federation des associations de patients atteints par une maladie rare ou d’origine génétique” – Federation of European Associations of Patients Affected by Rare and Genetic Kidney Diseases – is not just a formality. It reflects the unique identity, needs and challenges of the people we represent.

 

FEDERG Strategic Plan – Priorities and objectives for the 2026–2029 period –

Organization: FEDERG – AISBL  Federation of European Patient Associations affected by rare and genetic kidney disease

1. Strategic Vision

FEDERG aims to continue being a leading patient advocacy force in the rare renal disease community across Europe. Building on our established collaboration with – ERKNet – and other key projects, we will focus on strengthening patient representation, contributing to research, and influencing health policies that advance diagnosis, treatment, and innovation

2. Strategic Priorities

To achieve our vision, FEDERG will focus on three core pillars:

1. Diagnosis

  • Promote early and accurate detection of rare kidney diseases.
  • Support genomic and gene-based diagnostic initiatives across European networks.
  • Collaborate with projects such as ERDERA and EP PerMed CARMEN 2026 to identify and address unmet diagnostic needs.

2. Treatment

  • Advocate for equitable access to current and emerging therapies, including gene and genomic-based therapies.
    • Work with clinical and research networks to ensure patient needs inform treatment development.
    • Participate in multidisciplinary initiatives to align therapeutic strategies with patient-centered outcomes.

3. Research

  • Engage actively in European research projects focusing on rare renal diseases.
    • Support studies that advance understanding of genetic causes and potential interventions.
    • Ensure patients’ voices are integrated into research priorities, ethics, and dissemination strategies.

3. Strategic Objectives

  1. Strengthen Collaboration with ERKNet: Maintain and expand our role as a primary patient representative, contributing to research and policy initiatives.
  2. Influence European Health Policy: Advocate for regulatory frameworks and funding mechanisms that accelerate rare renal disease research and therapy development.
  3. Promote Innovation: Support gene therapy, genomic medicine, and other advanced treatment research through partnerships and knowledge exchange.
  4. Expand Patient Representation: Increase the diversity and expertise of patient advocates, in Congress and High Event of Nephrology.
  5. Raise Awareness and Education: Enhance communication efforts to highlight unmet needs, promote patient-centered policies, and share knowledge with the wider community.

4. Implementation Plan

2026–2027: Strengthen partnerships with ERKNet, ERDERA, ERPedMed, and other European research consortia. Focus on mapping unmet needs in diagnosis and treatment.

2027–2028: Launch advocacy initiatives targeting health policies that support gene and genomic therapies, including pilot collaborations in clinical research.

2028–2029: Consolidate research outcomes, integrate patient perspectives into European regulatory frameworks, and disseminate best practices for diagnosis and treatment across Europe.

5. Expected Impact

By following this strategic plan, FEDERG will:

  • Ensure that patients with rare renal diseases have a stronger voice in research, policy, and clinical care.
  • Facilitate the development and access to innovative therapies, including gene and genomic-based treatments.
  • Position itself as a key driver of change in European rare renal disease networks and policies.