Endo-ERN Patient Representatives

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.

logo ePAG
ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process. Patient organisations can become ePAG member organisations and patients can become ePAG representatives.

How to become an Endo-ERN patient representative 

Endo-ERN patient representatives:

MTG1 Adrenal

Johan Beun
Johan Beun
Johan Beun
Johan is patient representative for Dutch Adrenal Society NVACP (Nijkerk, Netherlands).
Manuela Brösamle
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Jette Kristensen
Jette Kristensen
Jette Kristensen
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Alessandro Lazzerini
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 Kirchhoff
Martha is patient representative for Phosphatdiabetes e.V. (Germany).

MTG3 Genetic Disorders of Glucose & Insulin Homeostasis

Valeria Corradin
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 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 Carl
Nathalie Ferard
Nathalie Ferard
Nathalie Ferard
Nathalie is patient representative for Association Grandir (Asnières sur Seine, France).
Elisabetta Freo
Elisabetta Freo
Elisabetta Freo
Berit Otterlei
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 de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
Diana Vitali
Diana Vitali
Diana Vitali

MTG7 Sex Development & Maturation

Manuela Brösamle
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Arlene Smith
Arlene Smith
Arlene Smith
Arlene is patient representative for Turner Syndrome Support Society (Clydebank, United Kingdom).

MTG8 Thyroid

Beate Bartès
Beate Bartès
Beate Bartès
Beate is patient representative for Vivre sans Thyroide (France).

WP1 Education & Training

Manuela Brösamle
Manuela Brösamle
Manuela Brösamle
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Petra Bruegmann
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 Beun
Johan is patient representative for Dutch Adrenal Society NVACP (Nijkerk, Netherlands).

WP3 Research & Science

Johan de Graaf
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 Kristensen
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Diana Vitali
Diana Vitali
Diana Vitali

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