Endo-ERN Patient Representatives (ePAGs)

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 Brösamle
Manuela Brösamle
Manuela is (parent) patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Giorgio Dal Maso
Giorgio Dal Maso
Giorgio Dal Maso
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italy).
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).
Zuzana Smith
Zuzana Smith
Zuzana Smith
Zuzana is (parent) patient representative for Združenie Addisonikov Slovenska (Nové Zámky, Slovakia).

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).
Nolwen LeFloch
Nolwen is patient representative for Association du syndrome de Wolfram (ASW) (Grand-Champ, France).
Bernd Rosenbichler
Bernd Rosenbichler
Bernd Rosenbichler
Bernd is (parent) patient representative for Alström Syndrom e.V. (Unterföhring, Germany).

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 (parent) patient representative for Association Grandir (Asnières sur Seine, France).
Berit Otterlei
Berit Otterlei
Berit Otterlei
Berit is (parent) patient representative for Landsforeningen for Prader-Willis Syndrom (Slependen, Norway).

MTG6 Hypothalamic and Pituitary Conditions

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

Chris Breen
Chris Breen
Chris Breen
Chris is patient representative for Klinefelter’s Syndrome Association (Matlock, United Kingdom).
Manuela Brösamle
Manuela Brösamle
Manuela Brösamle
Manuela is (parent) patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Arlene Smyth
Arlene Smyth
Arlene Smyth
Arlene is (parent) 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).

WP2 Dissemination

Beate Bartès
Beate Bartès
Beate Bartès
Beate is patient representative for Vivre sans Thyroide (France).
Zuzana Smith
Zuzana Smith
Zuzana Smith
Zuzana is (parent) patient representative for Združenie Addisonikov Slovenska (Nové Zámky, Slovakia).

WP3 Evaluation

Johan de Graaf
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).

WP4 Healthcare & CPMS

Valeria Corradin
Valeria Corradin
Valeria Corradin
Valeria is patient representative for AILIP (Ass.ne Italiana Lipodistrofia) (Dossobuono, Italy).
Alessandro Lazzerini
Alessandro Lazzerini
Alessandro Lazzerini
Alessandro is (parent) patient representative for Spanish Association of Congenital Adrenal Hyperplasia (CAH) (Spain).

WP5 Registries, data management and analysis

Chris Breen
Chris Breen
Chris Breen
Chris is patient representative for Klinefelter’s Syndrome Association (Matlock, United Kingdom).
Giorgio Dal Maso
Giorgio Dal Maso
Giorgio Dal Maso
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (Bologna, Italy).
Johan de Graaf
Johan de Graaf
Johan de Graaf
Johan is patient representative for Dutch Pituitary Foundation (Nijkerk, Netherlands).
Martha Kirchhoff
Martha Kirchhoff
Martha Kirchhoff
Martha is patient representative for Phosphatdiabetes e.V. (Germany).
Arlene Smyth
Arlene Smyth
Arlene Smyth
Arlene is (parent) patient representative for Turner Syndrome Support Society (Clydebank, United Kingdom).

WP6 Education and Training

Manuela Brösamle
Manuela Brösamle
Manuela Brösamle
Manuela is (parent) 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).

WP7 Clinical Practice Guidelines and Clinical Decision Support Tools

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).
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

Information video for patients and healthcare professionals

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