Endo-ERN

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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)
- Pituitary (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
- Guidelines
- Other Projects
Publications

WP2

E-Health & ICT

The current landscape of European registries for rare endocrine conditions

Posted on November 14th, 2018November 30th, 2018

On behalf of Endo-ERN the publication on ‘The current landscape of European registries for rare endocrine conditions’ was recently posted in the European Journal of Endocrinology. The objective was to identify international registries led from Europe for rare endocrine conditions and to understand the extent of engagement with these registries within Endo-ERN. Continue reading →

This entry was posted in ERN, EU, General, WP2.

6th International Summer School on Rare Disease and Orphan Drug Registries

Posted on October 16th, 2018October 16th, 2018

The 6th International Summer School on Rare Disease and Orphan Drug Registries took place from September 10 to September 14, 2018, in Rome, Italy. The course was addressed to professionals and patients involved in, or planning, the establishment of a rare disease registry, particularly within the European Reference Networks (ERNs). Continue reading →

This entry was posted in ERN, General, WP2.

Rare Disease Registries Kick-off

Posted on May 9th, 2018May 9th, 2018

EuRRECa was present at the Rare Disease Registries Projects kick-off meeting in Luxembourg on 17th April. Continue reading →

This entry was posted in ERN, General, WP2.

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EJPRD internal call for innovation projects in clinical trials methodologies information/network meeting

In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close [...]

EJPRD’s Internal call for innovation project in clinical trials methodology

The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations has been launched on December 7, 2020. The call is open to [...]

Endo-ERN webinar: Endocrine and bone management in Duchenne muscular dystrophy

In this webinar, Dr. Jarod Wong from the University of Glasgow will review the endocrine and bone morbidity in DMD with focus on the updated [...]

Endo-ERN newsletter November 2020

The Endo-ERN newsletter November 2020 is out now! Read more about the upcoming & recording Endo-ERN webinars, New MTG8 chairs, Launch of Exchange Programme for [...]

Launch of Exchange Programme for healthcare professionals in European Reference Networks

Knowledge sharing and stimulating collaboration between health care professionals in European Reference Networks (ERN). That is the aim of the Exchange Programme 2020-2022, funded by [...]