Endo-ERN Patient Representatives ePAG
The patient view and voice are implemented at the core of Endo-ERN activities. European Patient Advocacy Group Patient Representatives (ePAGs) are represented in all Main Thematic Groups and preferably also within the different Work-Packages that have been devised to tackle the different goals within Endo-ERN. It is our aim for our patient representatives to represent the different member states within Endo-ERN.
For more information on how Endo-ERN includes patient view in its activities, contact our work package leaders.
Endo-ERN patient representatives:
MTG1 Adrenal
Johan Beun
Johan Beun
Johan is patient representative for Dutch Adrenal Society NVACP (Nijkerk, Netherlands).
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Jette Kristensen
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Alessandro Lazzerini
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spain).
MTG2 Disorders of Calcium & Phosphate Homeostasis
Martha Kirchhoff
Martha Kirchhoff
Martha is patient representative for Phosphatdiabetes e.V. (Germany).
MTG3 Genetic Disorders of Glucose & Insulin Homeostasis
Valeria Corradin
Valeria Corradin
Valeria is patient representative for AILIP (Ass.ne Italiana Lipodistrofia) (Dossobuono, Italy).
MTG4 Genetic Endocrine Tumour Syndromes
Petra Bruegmann
Petra Bruegmann
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (Fürth, Germany).
MTG5 Growth & Genetic Obesity Syndromes
Patricia Carl
Patricia Carl
Patricia is patient representative for BKMF e.V. (Federal Association for People of Short Stature and their Families) (Bremen, Germany).
Nathalie Ferard
Nathalie Ferard
Nathalie is patient representative for Association Grandir (Asnières sur Seine, France).
Elisabetta Freo
Elisabetta Freo
Elisabetta is (parent) patient representative for A Fa DOC (Association of patient’s families with deficit of growth factor and similar disorder) (Vicenza, Italy).
Berit Otterlei
Berit Otterlei
Berit is patient representative for Landsforeningen for Prader-Willis Syndrom (Slependen, Norway).
MTG6 Pituitary
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
Diana Vitali
Diana Vitali
Diana is (parent) patient representative for SOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disorders (Roma, Italy).
MTG7 Sex Development & Maturation
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Arlene Smith
Arlene Smith
Arlene is patient representative for Turner Syndrome Support Society (Clydebank, United Kingdom).
MTG8 Thyroid
WP1 Education & Training
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Petra Bruegmann
Petra Bruegmann
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (Fürth, Germany).
WP2 E-Health & ICT
Johan Beun
Johan Beun
Johan is patient representative for Dutch Adrenal Society NVACP (Nijkerk, Netherlands).
WP3 Research & Science
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
WP4 Quality of Care & Patient View
Jette Kristensen
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Diana Vitali
Diana Vitali
Diana is (parent) patient representative for SOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disorders (Roma, Italy).
Is your patient organisation interested in becoming an ePAG member organisation? Or are you interested in becoming an ePAG patient representative?
Please contact the Endo-ERN Coordinating Centre