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.
How to become an Endo-ERN patient representative
Endo-ERN patient representatives:
MTG1 Adrenal
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Giorgio Dal Maso
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italy).
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spain).
Zuzana Smith
Zuzana is patient representative for Združenie Addisonikov Slovenska (Nové Zámky, Slovakia).
MTG2 Disorders of Calcium & Phosphate Homeostasis
Martha Kirchhoff
Martha is patient representative for Phosphatdiabetes e.V. (Germany).
MTG3 Genetic Disorders of Glucose & Insulin Homeostasis
Valeria Corradin
Valeria is patient representative for AILIP (Ass.ne Italiana Lipodistrofia) (Dossobuono, Italy).
Nolwen is patient representative for Association du syndrome de Wolfram (ASW) (Grand-Champ, France).
MTG4 Genetic Endocrine Tumour Syndromes
Petra Bruegmann
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (Fürth, Germany).
MTG5 Growth & Genetic Obesity Syndromes
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 is patient representative for Association Grandir (Asnières sur Seine, France).
Berit Otterlei
Berit is patient representative for Landsforeningen for Prader-Willis Syndrom (Slependen, Norway).
MTG6 Hypothalamic and Pituitary Conditions
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
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
Chris Breen
Chris is patient representative for Klinefelter’s Syndrome Association (Matlock, United Kingdom).
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Arlene Smyth
Arlene is patient representative for Turner Syndrome Support Society (Clydebank, United Kingdom).
MTG8 Thyroid
WP2 Dissemination
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
WP3 Evaluation
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
WP4 CPMS
Valeria Corradin
Valeria is patient representative for AILIP (Ass.ne Italiana Lipodistrofia) (Dossobuono, Italy).
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spain).
WP5 Other Digital Activities
Giorgio Dal Maso
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italy).
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
Arlene Smyth
Arlene is patient representative for Turner Syndrome Support Society (Clydebank, United Kingdom).
WP6 Education and Training
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Petra Bruegmann
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (Fürth, Germany).
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
WP7 Standards of Quality of Care
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Diana Kwast-Hoekstra
Diana is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spain).
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
