News

Are you a patient living with a rare or low-prevalence connective tissue disease? Tell your story! Among other initiatives, the ERN ReCONNET is working on the development of [...]

The new ERN ReCONNET Strategic Board  We are pleased to announce the composition of the new ERN ReCONNET Strategic Board. We extend our warmest congratulations to the new members of the Board for [...]

The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee on Public Health (SANT) in bringing a better understanding and detailed knowledge of the [...]

ERN ReCONNET celebrates the Rare Disease Day lighting the Leaning Tower of Pisa. ERNs stand close to all those living with a rare disease. Rare is many. Rare is strong. Rare is proud.  

Welcome to Ramona Luciu, the new ERN ReCONNET ePAG Advocate representing UCTD! Ramona Luciu is from from Romania, she has been diagnosed with UCTD in 2021 and she represents the UCTD patient [...]

Just a few days ahead of the 2025 Rare Disease Day and the European Commission has recently published a series of documents on Rare Diseases, including a new Booklet “European Reference [...]

The new ERN ReCONNET Newsletter n. 27 – DECEMBER EDITION – is out! Here is a list of our last news for this amazing new edition: Season’s Greetings from the Network Coordinator of ERN [...]

The new ERN ReCONNET Newsletter n. 26 – SEPTEMBER EDITION – is out! Here is a list of our last news for this amazing new edition: 2nd ERN ReCONNET International Congress on rare and [...]

In the US, during 1950s-1960s Dr. Robert Guthrie developed a paper blood spot card test as a new assay to screen newborns for phenylketonuria, PKU: The Newborn Screening (NBS) test was born. His [...]

The ERN ReCONNET Education and Training Working Group (WG) is glad to release its new flyer on nailfold videocapillaroscopy (NVC), a new and informative document targeting patients and lay [...]