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About ERN
About Endo-ERN
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Specific Expertise
Overview
Adrenal (MTG1)
Disorders of Calcium &
Phosphate Homeostasis (MTG2)
Genetic Disorders of Glucose &
Insulin Homeostasis (MTG3)
Genetic Endocrine
Tumour Syndromes (MTG4)
Growth &
Genetic Obesity Syndromes (MTG5)
Hypothalamic and Pituitary Conditions (MTG6)
Sex Development &
Maturation (MTG7)
Thyroid (MTG8)
Patients
Introduction
European Patient Advocacy Group
How to Become an Endo-ERN patient representative
Endo-ERN Patient Representatives
Conditions
Cross-border Healthcare
Patient information materials
Activities
Knowledge Generation
Research Activities
Clinical Activities & eHealth
Clinical Trials
Endo-ERN Studies
ERN Exchange Programme
Guidelines
Evaluation
Other Projects
Publications
Evaluation
Overview
Continuous Monitoring Programme
5-Year Evaluation
Patient Resources
AMEQUIS
About
About
European Reference Network on Rare Endocrine Conditions mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine conditions in Europe, through facilitating knowledge sharing and facilitating related healthcare en research.
About ERN
About Endo-ERN
Governance
Reference Centres
ERN Information Materials
Specific Expertise
Specific Expertise
According to usual classification of endocrine conditions, specific diagnostic and therapeutic approaches and composition of the required multidisciplenary teams, eight established Main Thematic Groups (MTGs) were defined within Endo-ERN.
Overview
Adrenal (MTG1)
Disorders of Calcium &
Phosphate Homeostasis (MTG2)
Genetic Disorders of Glucose &
Insulin Homeostasis (MTG3)
Genetic Endocrine
Tumour Syndromes (MTG4)
Growth &
Genetic Obesity Syndromes (MTG5)
Hypothalamic and Pituitary Conditions (MTG6)
Sex Development &
Maturation (MTG7)
Thyroid (MTG8)
Patients
Patients
Adequate patient representation and coverage of all expertise, and preferably also of the Work-Packages across all member states is top-priority for Endo-ERN. Patients are represented in the Steering Committee to ensure active patient involvement in any strategic decision and action.
Introduction
European Patient Advocacy Group
How to Become an Endo-ERN patient representative
Endo-ERN Patient Representatives
Conditions
Cross-border Healthcare
Patient information materials
Activities
Activities
Endo-ERN activities are defined in five work packages throughout different phases.
Knowledge Generation
Research Activities
Clinical Activities & eHealth
Clinical Trials
Endo-ERN Studies
ERN Exchange Programme
Guidelines
Evaluation
Other Projects
Publications
Evaluation
Evaluation
The objective of the European Reference Networks is to ensure accessible diagnosis and treatment for rare diseases. This care should be consistent across the EU/EEA and rare disease type.
Overview
Continuous Monitoring Programme
5-Year Evaluation
Patient Resources
AMEQUIS
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Specific Expertise
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Sex Development & Maturation (MTG7)
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Patient information materials
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Gender Dysphoria
Sex chromosome DSD: Turner syndrome
46,XX-DSD
46,XY-DSD
Kallmann syndrome and other CHH syndromes
Gender Dysphoria
Gender Dysphoria
Gender Dysphoria
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