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E-learning course in growth disorders and endocrine complications in youth and adults with thalassemia

February 28, 2019

This online e-learning module prepared that will support interactively the Thalasemia guide for Patients, and Thalasemia Guide for Hematologs and Nurses in the framework of the European EQUALITY project. The focus of the ICT-based training programme be hematologs and interested medical doctors. The module  include online tests.

Rare Disease Day 2019 is approaching! Show your rare. Show you care.

February 28, 2019

 

Rare Disease Day is approaching and thousands of events are organised worldwide to celebrate this special day. The theme for Rare Disease Day 2019 is 'Bridging health and social care'. This theme places attention on the importance of bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

 

RD-Connect invites ERN members to join the RD-Connect Community

In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world. Several ERNs have signed up as members, but you are welcome to register as individual healthcare professionals HCPs and research groups.

RD-Connect announces educational webinar series for ERN Stakeholders

August 21, 2018

RD-Connect is organising a series of webinars aiming to train ERN members on RD-Connect tools designed to help clinicians and researchers study and diagnose rare diseases.

Joint Action on Rare Cancers (JARC) and ERNs

August 20, 2018

 JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers

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