European Patient Advocacy Group
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 organizations who will ensure that the patient voice is heard throughout the ERN development process. Patient organizations can become ePAG member organizations and patients can become ePAG representatives.
How to become an ePAG
Endo-ERN patient representatives:
Patient representative for the Dutch Adrenal Society NVACP, representative of the board, The Netherlands
Patient representative for the “Association Surrénales” , Member, France
Patient representative for the Addison Foreningen Danmark, chairman, Denmark
Genetic endocrine tumour syndromes:
Patient representative for the German Network of Pituitary and Adrenal Diseases, Leader of the MEN group, Germany
Patient representative for the BKMF e.V. (Federal Association for People of Short Stature and their Families), Chairwoman, Germany
(Parent) Patient representative for the A Fa DOC (Association of patient’s families with deficit of growth factor and similar disorder)” Memebr of the executive board, Italy
Patient representative for the Dutch Pituitary Foundation, chairman, The Netherlands
(Parent) Patient representative for the Associazione Italiana Displasia Setto Ottica eIpoplasia del Nervo Ottico, founder and president, Italy
Disorders of sex development & maturation:
Patient representative for the AGS-Eltern- und Patienteninitiative e.V., Secretary, Germany
Patient representative for the Schildklierkanker werkgroep (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