European Patient Advocacy Group

European Patient Advocacy Group 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 ePAG 

Endo-ERN patient representatives:

Adrenal:

  • epag-johan-beun
    Johan Beun
    Johan G. Beun
    Patient representative for the Dutch Adrenal Society NVACP, representative of the board, The Netherlands
  • Carole-Delorme
    Carole Delorme
    Carole Delorme
    Patient representative for the “Association Surrénales” , Member, France
  • epag-jette-kristensen
    Jette Kristensen
    Jette Kristensen
    Patient representative for the Addison Foreningen Danmark, chair, Denmark
  • Genetic endocrine tumour syndromes:

  • epag-petra-bruegmann
    Petra Brügmann
    Petra Brügmann
    Patient representative for the German Network of Pituitary and Adrenal Diseases, Leader of the MEN group, Germany
  • Growth:

  • Patricia-Carl
    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
    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:

  • epag-johan-de-graaff
    Johan de Graaff
    Johan de Graaf
    Patient representative for the Dutch Pituitary Foundation, chair, The Netherlands
  • epag-diana-vitali
    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
    Manuela Brösamle
    Patient representative for the AGS-Eltern- und Patienteninitiative e.V., Secretary, Germany
  • Thyroid

  • Marika-Porrey
    Marika Porrey
    Marika Porrey
    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