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.
The misdiagnosis of metabolic diseases' webinars are free, and a certificate of attendance will be provided by the for those who attend all sessions.
The NCL Foundation will evaluate proposals for its NCL Research Award. The goal of this award is to support an innovative pilot project at the Postdoctoral fellowship level. The NCL Foundation encourages junior scientists, clinical researchers and medical fellows worldwide to submit project proposals that hold promise to help find or to facilitate the moving forward of therapies for CLN3 disease.
The International Course Training on strategies to foster solutions of undiagnosed rare disease cases is part of a series of training activities.
The Freiburg Annual Symposium shall take place in September 2022 at the Freiburg Trade Fair Center and very much looks forward to welcoming you to Germany.
Three key documents are now available for candidates to prepare their applications for the Call for membership to existing ERNs. The first call for new members to join existing 24 ERNs is going to be launched on 30 of September 2019 until 30 of November 2019.
Malta has designated the Mater Dei Hospital (MDH) as a National Coordination Hub for ERNs and MetabERN has been nominated by six associated national centres.