European Patient Advocacy Group

European Patient Advocacy Group

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European Patient Advocacy Group

 

Participating European Patient Advocacy Groups (ePAGs)
Patient OrganisationCountryMember of MTGsRepresentative(s)
Addison Foreningen DanmarkDenmark MTG1 Adrenal Jette Kristensen
Vivre sans ThyroideFrance MTG8 Thyroid Beate Bartès
Association GrandirFrance MTG5 Growth & Genetic Obesity Syndromes Nathalie Ferard
AGS-Eltern- und Patienteninitiative e.V.Germany MTG1 Adrenal
MTG7 Sex Development & Maturation
Manuela Brösamle
Phosphatdiabetes e.V.Germany MTG2 Disorders of Calcium & Phosphate Homeostasis Martha Kirchhoff
BKMF e.V. (Federal Association for People of Short Stature and their Families)Germany MTG5 Growth & Genetic Obesity Syndromes Patricia Carl
German Network of Pituitary and Adrenal DiseasesGermany MTG4 Genetic Endocrine Tumour Syndromes Petra Bruegmann
ArfSAG (Associazione Refionale Famiglie Sindrome Adreno Genitale)Italy MTG1 Adrenal Giorgio Dal Maso
AILIP (Ass.ne Italiana Lipodistrofia)Italy MTG3 Genetic Disorders of Glucose & Insulin Homeostasis Valeria Corradin
SOD ITALIA – Italian organization for septo optic dysplasia and other neuroendocrine disordersItaly MTG6 Pituitary Diana Vitali
A Fa DOC (Association of patient’s families with deficit of growth factor and similar disorder)Italy MTG5 Growth & Genetic Obesity Syndromes Elisabetta Freo
Dutch Adrenal Society NVACPNetherlands MTG1 Adrenal Johan Beun
Dutch Pituitary FoundationNetherlands MTG6 Pituitary Johan de Graaf
Landsforeningen for Prader-Willis SyndromNorway MTG5 Growth & Genetic Obesity Syndromes Berit Otterlei
Spanish Association of Congenital Adrenal Hyperplasia (CAH)Spain MTG1 Adrenal Alessandro Lazzerini
Turner Syndrome Support SocietyUnited Kingdom MTG7 Sex Development & Maturation Arlene Smyth
Last update: November 23, 2021 on 10:44

 

Main thematic group Country Network
Adrenal Europe AdrenalNET