Patient Advocacy Group

European Patient Advocacy Group (ePAG)

Patient organisations can participate in the ERN GENTURIS decision-making processes to ensure that the patient voice is heard throughout the ERN GENTURIS development process. Patient organisations can become member organisations of the ERN GENTURIS European Patient Advocacy Group (ePAG), and patients can become ePAG representatives.

ePAG patient representatives have an official permanent mandate to represent ePAG member organisations. They liaise with these organisations to ensure true and equitable representation of the patient voice by participating in the Board and sub-clinical committees of ERN GENTURIS.

The establishment of ePAGs for ERN GENTURIS and other ERN disease groupings is coordinated by EURORDIS. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 733 rare disease patient organisations in 64 countries. EURORDIS is also implementing an ePAG leadership capacity-building programme, which will empower ePAG patient representatives with the knowledge and skills they need to be able to effectively participate in ERN activities.

ERN GENTURIS patient representatives

The ePAG representatives for ERN GENTURIS are:

Neurofibromatosis: 
Lynch and polyposis: 
Hereditary breast and ovarian cancer:  
Other rare genturis:
Hereditary cancers (general):
  • Tamara Hussong Milagre, president of Evita (Portuguese Association of carriers of genetic mutations related to Hereditary Cancer)

Is your patient organisation interested in becoming an ePAG member organisation? Please contact one of the ePAG representatives listed above, or use this form.