Back to Search Start Over

Clinical practice guidelines: the first year of activity of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)

Authors :
Marta Mosca
Maurizio Cutolo
Source :
RMD Open
Publication Year :
2018
Publisher :
BMJ Publishing Group, 2018.

Abstract

Key messages #### What is already known about this subject? #### What does this study add? #### How might this impact on clinical practice? An impressive number of almost 5000–8000 rare diseases affect the daily lives of around 30 million people in the European Union (EU) and many of those affected by a rare or complex condition do not have access to diagnosis and high-quality treatment. European Reference Networks (ERNs) are virtual networks involving healthcare providers (HCPs) across Europe with the aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources. ERNs offer the potential to give patients and doctors across the EU access to the best expertise and timely exchange of life-saving knowledge, making knowledge travel more than patients.1 Following the first call for proposals in July 2016, the first ERNs were approved in December 2016 and launched in March 2017 in Vilnius during the 3rd conference on ERNs, where their kick off meetings took place. At their inception, the networks comprised more than 900 highly specialised healthcare units located in 313 hospitals in 26 EU countries.2 From …

Details

Language :
English
Database :
OpenAIRE
Journal :
RMD Open
Accession number :
edsair.doi.dedup.....97c49e66943178dc91485b2df62b6696