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

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 LeFloch

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

Beate Bartès

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

WP2 Dissemination

Beate Bartès

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

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