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-profit alliance of over 1000 rare disease patient organisations from 74 countries. EURORDIS has established the Patient Partnership Hub that gathers resources to enhance the patient-clinician collaboration in healthcare.

ERN GENTURIS patient representatives

The ePAG representatives for ERN GENTURIS are:

Patient representatives for Thematic Group 1: Schwannomatosis and neurofibromatosis

Claas Röhl, chairman of the Austrian patient organisation for NF patients "NF Kinder", ERN GENTURIS Board member.

 

João de Sousa e Silva, patient representative for NF2, NF Patients United

 

Patient representatives for Thematic Group 2: Lynch syndrome and polyposis

Nicola Reents (L), secretary of Familienhilfe Darmkrebs e.V. / Semi-Colon (German patient association for Lynch and Polyposis) and Georgina Hoffmann (R), member of Familienhilfe Darmkrebs e.V. / Semi-Colon

 

Jurgen Seppen, chairman of the Dutch Lynch and Polyposis Foundation.

 

Patient representatives for Thematic Group 3: Hereditary Breast and Ovarian Cancer Syndrome

Darja Molan, board member of Europa Donna Slovenia

 

Salvo Testa, president of MUTAGENS, Italy

 

Patient representatives for Thematic Group 4: Other rare – predominantly malignant – genturis

Claudio Ales, president of Pten Italia (Italian Association for the fight against PHTS)

 

Joana Pais Afonso, Global Communications and Culture Manager, Portugal. Joana has been diagnosed with DICER1 syndrome.

 

Patient representatives for 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.