Archives

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 [...]

ERN ReCONNET is very honored to be at the ACR Convergence 2024 that will take place November 14 – 19 at the Walter E. Washington Convention Center in Washington, D.C.! The ERN ReCONNET [...]

ERN ReCONNET is a growing Network and we are pleased to announce our new ePAG advocates that recently have joined us following the addition of Jose Ballarin in June. Those women will further [...]

The ERN ReCONNET has elected its new Disease Coordinators that will lead the activities and actions of the Ehlers-Danlos syndromes (EDS) and the Sjögren’s Syndrome* (SS) disease groups. The [...]

Don’t miss your chance to nominate your star of the rare disease community, or enter yourself, for the 2025 EURORDIS Black Pearl Awards! These award categories recognise the outstanding efforts [...]

The ERICA 4th General Assembly & ERN Research Conference, hosted by MetabERN, will take place from December 11th to December 13th, 2024 in Udine (Italy). The aim of the ERICA consortium, in [...]

The public webinar “Towards a World Health Assembly Resolution on Rare Diseases 2025”, that will take place on Aug. 30th 2024, 14:00 and 15:30 CEST. This webinar, co-hosted by Rare Diseases [...]

On August 9 and 10, 2024, the first Myositis Summer School of the Myositis Network Germany, endorsed by the ERN ReCONNET, took place at the Kerckhoff Campus of the JLU Gießen in Bad Nauheim. This [...]

There are a number of challenges surrounding the development of Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) for rare diseases. One of the most relevant [...]