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:
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Claas Röhl, chairman of the Austrian patient organisation for NF patients "NF Kinder", ERN GENTURIS Board member. |
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João de Sousa e Silva, patient representative for NF2, NF Patients United |
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Lynch and polyposis:
| Nicola Reents, secretary of Familienhilfe Darmkrebs e.V. / Semi-Colon (German patient association for Lynch and Polyposis) | |
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| Jurgen Seppen, chairman of the Dutch Lynch and Polyposis Foundation. | |
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Hereditary breast and ovarian cancer:
| Darja Molan, board member of Europa Donna Slovenia | |
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| Salvo Testa, president of MUTAGENS, Italy | |
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Other rare genturis:
| Claudio Ales, president of Pten Italia (Italian Association for the fight against PHTS) | |
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Hereditary cancers (general):
| Tamara Hussong Milagre, president of Evita (Portuguese Association of carriers of genetic mutations related to Hereditary Cancer) | |
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