Members
Newsletter

Professionals
News
Events
Contact
ERN
FAQ

About
Specific Expertise
Patients
Activities
Publications
Evaluation

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

3.c_The first days DSD parents_PK.IN

Posted on February 21st, 2022

No Meta Header set for this Custom Post Type

This entry was posted in .

Share this item via:

endo-newsletter-banner-02

Subscribe to our newsletter...

Recent News

ERN Clinical Exchange Programme: Amsterdam to Basel

Inspiration and innovation were the driving forces behind Dr Dirk Jan Stenvers application to the ERN Exchange Programme. Dr Stenvers, a clinical endocrinologist at Amsterdam [...]

ERICA SURVEY: ERNs Clinical Research

This survey aims to collect information on the status quo on ERNs and Clinical Research. It is developed by ERICA WP4 Clinical Trial Support on [...]

SURVEY: Public Consultation on the Strategic and Innovation Agenda of the RD Parnership is now open for public consultation

Under Horizon Europe, the European Commission together with member states and associated countries decided to implement the Rare Diseases Partnership which brings a unique vision [...]

WEBINAR: Klinefelter syndrome – from genomics to the clinic

One of the aims of Endo-ERN is to share the expert across the network and beyond. We are fortunate that our members are very active [...]

WEBINAR: Management of thyroid nodules in children (ETA guidelines)

Register now for this webinar planned by members of Endo-ERN’s Main Thematic Group 8 Thyroid. Event chairs: H.M. van Santen, MD PhD, Pediatric Endocrinologist & [...]

Upcoming Events

WEBINAR: Puberty induction in the two sexes – a case based discussion

June 20^th, 2023

WEBINAR: ESE Talks…Use of EuRRECa databases to enhance our understanding of XLH and parathyroid carcinoma

June 27^th, 2023

WEBINAR: Management of thyroid nodules in children (ETA guidelines)

June 29^th, 2023

WEBINAR: Getting to Know Virtual Consultations

July 13^th, 2023

WEBINAR: Klinefelter syndrome – from genomics to the clinic

August 31^st, 2023

Endo-ERN
Coordinating Center
Meibergdreef 9
1105 AZ AMSTERDAM
The Netherlands

info@endo-ern.eu

LinkedIn
Twitter
YouTube
Facebook

Endo-ERN is funded by the European Union’s Health Programme.

Quick Menu

Home
Contact
Newsletter
Frequently Asked Questions
Privacy
Downloads

© 2016 - 2023 Endo-ERN

Designed by: FeekDesign

Go to top