Endo-ERN Patient Representatives ePAG

Adequate patient representation and coverage of all Main Thematic Groups, and preferably also of the Work-Packages across all member states is top-priority for Endo-ERN.

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:

Adrenal:

Johan Beun

Johan G. Beun
Patient representative for the Dutch Adrenal Society NVACP, representative of the board, The Netherlands

Carole Delorme

Carole Delorme
Patient representative for the “Association Surrénales” , Member, France

Jette Kristensen

Jette Kristensen
Patient representative for the Addison Foreningen Danmark, chair, Denmark

Disorders of Calcium & Phosphate Homeostasis:

Natalie Grosset
Patient representative for the HypoparathyroidismeFrance, co-president, France

Genetic Disorders of Glucose & Insulin Homeostasis:

Marina Valenti
Patient representative for the ASS.A.I. Onlus, Italy

Genetic endocrine tumour syndromes:

Petra Brügmann

Petra Brügmann
Patient representative for the German Network of Pituitary and Adrenal Diseases, Leader of the MEN group, Germany

Jo Grey
Patient representative for the Association for multiple endocrine neoplasia disorders (AMEND), CEO, United Kingdom

Growth:

Patricia Carl

Patricia Carl
Patient representative for the BKMF e.V. (Federal Association for People of Short Stature and their Families), Chair, Germany

Elisabetta Freo

Elisabetta Freo
(Parent) Patient representative for the A Fa DOC (Association of patient’s families with deficit of growth factor and similar disorder)” Member of the executive board, Italy

Pituitary:

Johan de Graaf

Johan de Graaf
Patient representative for the Dutch Pituitary Foundation, chair, The Netherlands

Diana Vitali

Diana Vitali
(Parent) Patient representative for the Associazione Italiana Displasia Setto Ottica eIpoplasia del Nervo Ottico, founder and president, Italy

Disorders of sex development & maturation:

Manuela Brösamle

Manuela Brösamle
Patient representative for the AGS-Eltern- und Patienteninitiative e.V., Secretary, Germany

Arlene Smyth
Patient representative for the Turner Syndrome Support Society, Executive Officer, UK

Thyroid

Marika Porrey

Marika Porrey
Patient representative for the Schildklier Organisatie Nederland (SON) / Thyroid Cancer Alliance , President, The Netherlands

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 Center