European Patient Advocacy Groups

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Participating European Patient Advocacy Groups (ePAGs)

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
Association du syndrome de Wolfram (ASW)France MTG3 Genetic Disorders of Glucose & Insulin Homeostasis Nolwen LeFloch
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 ( 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 Hypothalamic and Pituitary Conditions Diana Vitali
Dutch Pituitary FoundationNetherlands MTG1 Adrenal
MTG6 Hypothalamic and Pituitary Conditions
Johan de Graaf, Diana Kwast-Hoekstra
Landsforeningen for Prader-Willis SyndromNorway MTG5 Growth & Genetic Obesity Syndromes Berit Otterlei
Združenie Addisonikov SlovenskaSlovakia MTG1 Adrenal Zuzana Smith
Spanish Association of Congenital Adrenal Hyperplasia (CAH)Spain MTG1 Adrenal Alessandro Lazzerini
Turner Syndrome Support SocietyUnited Kingdom MTG7 Sex Development & Maturation Arlene Smyth
Klinefelter’s Syndrome AssociationUnited Kingdom MTG7 Sex Development & Maturation Chris Breen
Last update: February 26, 2024 on 14:17
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