Association Geniris

Association GENIRIS is involved in patient advocacy as part of the European Reference Network for Genetic Tumor Risk Syndromes (ERN GENTURIS). It participates in the European Patient Advocacy Group (ePAG), which is designed to ensure that the patient voice is represented in the decision-making processes of ERN GENTURIS. This group allows patient organizations to have a direct influence on the development and implementation of strategies related to rare genetic diseases.

Role in Patient Advisory Board

As a patient representative within the Patient Advisory Board at EJPRD (European Joint Programme on Rare Diseases), Association GENIRIS plays a crucial role in advocating for patients' needs and priorities. The organization collaborates with other ePAG representatives to provide insights and feedback on research projects, ensuring that the perspectives of patients are integrated into scientific discussions and policy-making processes. This involvement is vital for enhancing patient-centered research and fostering collaboration among stakeholders in the rare disease community.12

Structure and Collaboration

The ePAG representatives, including those from Association GENIRIS, have a permanent mandate to represent their respective organizations. They engage with various committees and boards, facilitating communication between patients and researchers, and ensuring that patient concerns are addressed in research initiatives. This structure is supported by EURORDIS, which provides training and resources to empower patient representatives.13

Conclusion

In summary, Association GENIRIS serves as a significant advocate for patients within the framework of ERN GENTURIS and EJPRD. Through its participation in the Patient Advisory Board, it helps shape research agendas and policies that directly affect individuals with genetic tumor risk syndromes, thereby enhancing the overall impact of patient advocacy in rare disease research.24