Patient Journeys “I will not be ashamed to say ‘I don’t know’, nor will I fail to call in my colleagues…” But what if there are no other healthcare...
On-time diagnosis is crucial for access to treatment and clinical trials, disease management, and to access the proper care services at the earliest of the disease possible.
This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together scientific leaders and experts and young scientists from a variety of breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss policies related to rare diseases research. Patients and patient organizations, who are committed to research, will also be in attendance to share their experiences and perspectives.
European Working Group on Gaucher Disease Webinar | Laboratory Diagnostics of Gaucher Disease - 11 Dec 2019 from 17:00-18:00 CET
A Networking Support Scheme (NSS) is implemented to encourage the sharing of knowledge on rare diseases and/or rare cancers of healthcare professionals, researchers, and patient advocacy organizations.
The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006.
The goal of this meeting was to encourage adult MPS patients to be independent – Stand on their Own.
On October 24, at 14:00 (CET), there will be a CPMS Webinar on the upcoming changes. Be sure not to miss it. Click on the article to get more details.
Sant Joan de Deu Hospital (Barcelona, Spain), one of the 69 MetabERN healthcare providers, has opened a clinical trial that recruits patients for an open-label study in male pediatric patients with cerebral X-LINKED ADRENOLEUKODYSTROPHY (cALD) to assess the effect of a new experimental treatment on the progression of cerebral lesions.