Rappresentanti dei Pazienti negli Endo-ERN Gli ePAG
La visione e la voce del paziente sono messe al centro delle attività di Endo-ERN. GliEuropean Patient Advocacy Group Patient Representatives (ePAGs) sono rappresentati in tutti i Main Thematic Group e preferibilmente anche all’interno dei Work-Packages che sono stati concepiti proprio per perseguire i diversi obiettivi nei vari Endo-ERN. Il nostro obiettivo è che i rappresentanti dei pazienti rappresentino i diversi Stati Membri all’interno degli Endo-ERN.
Per ulteriori informazioni su come gli Endo-ERN considerano il punto di vista del paziente nelle proprie attività, contatta i nostri leader dei work package.
I Rappresentanti di pazienti negli Endo-ERN:
Ghiandola Surrenale:
MTG1 Ghiandola Surrenale
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germania).
Giorgio Dal Maso
Giorgio Dal Maso
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italia).
Jette Kristensen
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Danimarca).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
Alessandro Lazzerini
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spagna).
MTG2 Disturbi dell’omeostasi del calcio e del fosfato
Martha Kirchhoff
Martha Kirchhoff
Martha is patient representative for Phosphatdiabetes e.V. (Germania).
MTG3 Disturbi genetici dell’omeostasi del glucosio e dell’insulina
Valeria Corradin
Valeria Corradin
Valeria is patient representative for AILIP (Ass.ne Italiana Lipodistrofia) (Dossobuono, Italia).
MTG4 Sindromi del tumore endocrino genetico
Petra Bruegmann
Petra Bruegmann
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (Fürth, Germania).
MTG5 Sindromi della Crescita e della Obesità genetica
Patricia Carl
Patricia Carl
Patricia is patient representative for BKMF e.V. (Federal Association for People of Short Stature and their Families) (Bremen, Germania).
Nathalie Ferard
Nathalie Ferard
Nathalie is patient representative for Association Grandir (Asnières sur Seine, Francia).
Berit Otterlei
Berit Otterlei
Berit is patient representative for Landsforeningen for Prader-Willis Syndrom (Slependen, Norvegia).
MTG6 Ghiandola Pituitaria
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
Diana Vitali
Diana Vitali
Diana is (parent) patient representative for SOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disorders (Roma, Italia).
MTG7 Sviluppo e maturazione sessuale
Chris Breen
Chris Breen
Chris is patient representative for Klinefelter’s Syndrome Association (Matlock, Regno Unito).
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germania).
Arlene Smyth
Arlene Smyth
Arlene is patient representative for Turner Syndrome Support Society (Clydebank, Regno Unito).
MTG8 Tiroide
WP2 Dissemination
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
WP3 Evaluation
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
WP4 CPMS
Valeria Corradin
Valeria Corradin
Valeria is patient representative for AILIP (Ass.ne Italiana Lipodistrofia) (Dossobuono, Italia).
Alessandro Lazzerini
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spagna).
WP5 Other Digital Activities
Giorgio Dal Maso
Giorgio Dal Maso
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italia).
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
Arlene Smyth
Arlene Smyth
Arlene is patient representative for Turner Syndrome Support Society (Clydebank, Regno Unito).
WP6 Education and Training
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germania).
Petra Bruegmann
Petra Bruegmann
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (Fürth, Germania).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
WP7 Standards of Quality of Care
Jette Kristensen
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Danimarca).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Paesi Bassi).
Alessandro Lazzerini
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spagna).
Diana Vitali
Diana Vitali
Diana is (parent) patient representative for SOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disorders (Roma, Italia).
La tua organizzazione di pazienti è interessata a diventare un membro ePAG? Interessa a te diventare un rappresentante del paziente ePAG?
Contatta il Endo-ERN Coordinating Centre