The Clinical Patient Management System (CPMS) was launched by the European Commission (Directorate-General for Health and Food Safety – DG SANTE) on November 20th 2017, as a web-based application aimed at supporting the European Reference Networks (ERNs) in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of EU Member States.
Webinar on the treatment with empagliflozin in patients with glycogen storage disease type Ib on 15 September 2020 at 16:00 - 17:30
The COVID-19 pandemic is testing the resilience of robust health systems around the world. This may be impacting you in many different ways, such as creating additional anxiety or exacerbating other medical or therapy issues related to your Inherited Metabolic Diseases (IMD).
Are you interested in calls and training courses of the European Joint Programme on Rare Diseases? Click here to discover what the EJPRD are planning.
The commentary ‘Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook’ has been published in Nature Reviews
Enhancing the Quality of Life of Persons Affected by Mucopolysaccharide Across Europe. By taking a multidisciplinary healthcare team approach we can better understand how to work with colleagues to support patients with MPS with their everyday healthcare needs, as well as by having a better understanding of the latest treatment options.
May 16th is the World Congenital Disorders of Glycosylation (CDG) Day. The worldwide CDG community joins efforts around this day to put together global awareness and education.
Training course “Quality assurance, variant interpretation & data management in the NGS diagnostic era” | Istanbul (Turkey) on 12-14 October 2020
Enthusiastic and ambitious Assistant Professor need at Radboud UMC to perform preclinical therapeutic studies for inherited neurometabolic diseases.