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 representativeEndo-ERN patient representatives:
Adrenal:
- Johan G. Beun
Johan 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