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.

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 is patient representative for Dutch Adrenal Society NVACP (Nijkerk, Netherlands).

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).

Alessandro Lazzerini

Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spain).

Nathalie Ferard

Nathalie is patient representative for Association Grandir (Asnières sur Seine, France).

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 is patient representative for Landsforeningen for Prader-Willis Syndrom (Slependen, Norway).

MTG6 Pituitary

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

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

Beate Bartès

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

WP1 Education & 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 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

Endo-ERN Patient Representatives

Endo-ERN Patient Representatives ePAG

Endo-ERN patient representatives:

MTG1 Adrenal

MTG2 Disorders of Calcium & Phosphate Homeostasis

MTG3 Genetic Disorders of Glucose & Insulin Homeostasis

MTG4 Genetic Endocrine Tumour Syndromes

MTG5 Growth & Genetic Obesity Syndromes

MTG6 Pituitary

MTG7 Sex Development & Maturation

MTG8 Thyroid

WP1 Education & Training

WP2 E-Health & ICT

WP3 Research & Science

WP4 Quality of Care & Patient View