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

Manuela Brösamle
Manuela Brösamle
Manuela Brösamle 
Manuela is 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) (BolognaItaly).
Jette Kristensen
Jette Kristensen
Jette Kristensen 
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra 
Diana is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).
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 patient representative for Združenie Addisonikov Slovenska (Nové ZámkySlovakia).

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) (DossobuonoItaly).
Nolwen LeFloch 
Nolwen is patient representative for Association du syndrome de Wolfram (ASW) (Grand-ChampFrance).

MTG4 Genetic Endocrine Tumour Syndromes

Petra Bruegmann
Petra Bruegmann
Petra Bruegmann 
Petra is patient representative for German Network of Pituitary and Adrenal Diseases (FürthGermany).

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 SeineFrance).
Berit Otterlei
Berit Otterlei
Berit Otterlei 
Berit is patient representative for Landsforeningen for Prader-Willis Syndrom (SlependenNorway).

MTG6 Hypothalamic and Pituitary Conditions

Johan de Graaf
Johan de Graaf
Johan de Graaf 
Johan is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).
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 (MatlockUnited Kingdom).
Manuela Brösamle
Manuela Brösamle
Manuela Brösamle 
Manuela is patient representative for AGS-Eltern- und Patienteninitiative e.V. (Germany).
Arlene Smyth
Arlene Smyth
Arlene Smyth 
Arlene is patient representative for Turner Syndrome Support Society (ClydebankUnited 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).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra 
Diana is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).

WP3 Evaluation

Johan de Graaf
Johan de Graaf
Johan de Graaf 
Johan is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).

WP4 CPMS

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

WP5 Other Digital Activities

Giorgio Dal Maso
Giorgio Dal Maso
Giorgio Dal Maso 
Giorgio is (parent) patient representative for ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale) (BolognaItaly).
Johan de Graaf
Johan de Graaf
Johan de Graaf 
Johan is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).
Arlene Smyth
Arlene Smyth
Arlene Smyth 
Arlene is patient representative for Turner Syndrome Support Society (ClydebankUnited Kingdom).

WP6 Education and 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 (FürthGermany).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra 
Diana is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).

WP7 Standards of Quality of Care

Jette Kristensen
Jette Kristensen
Jette Kristensen 
Jette is patient representative for Addison Foreningen Danmark (Denmark).
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra
Diana Kwast-Hoekstra 
Diana is patient representative for Dutch Pituitary Foundation (NijkerkNetherlands).
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