Informative materials, where you will find out what we've achieved in the first year, what the plans are for the second year, and to gather some information about the ERN and MetabERN?
As the European Commission (EC) has already notified, the Andalusian Agency for Healthcare Quality (ACSA) has been selected as an Independent Assessment Body (IAB) to perform the technical assessment of a sample of ERN members’
Prof Maurizio Scarpa (MetabERN Coordinator), Francjan van Spronsen, MetabERN Representative from Rijksuniversiteit Groningen (NL), and Lut de Baere responsible for the MetabERN Patients organisations management, have recently participated in the policy Round Table on Phenylketonuria (PKU)
We are glad to announce that our MetabERN Coordinator, Professor Maurizio Scarpa, has been recently invited to speak at an event that Genetic Alliance UK, the charity supporting all those affected by rare, genetic and undiagnosed conditions, hold on Monday 9 July.
A patient survey has been created to help understand what are patients' needs. The survey has been translated into 7 languages.
The European Commission adopted a legislative proposal for a new European Social Fund Plus (ESF+) Programme in May 2018, based on the proposed Multiannual Financial Framework for the period 2021-2027.
We are happy to inform you that on Tuesday 15 May a new collaborative space called 'Plaza' had been added to the ERN Collaborative Platform (ECP).
On 29-30 May 2018, the European Medicines Agency (EMA), RD-ACTION (the European Joint Action for Rare Diseases) and the European Commission’s Directorate General for Health and Food Safety (DG SANTE), organised a workshop to explore how to work together with the European Reference Networks (ERNs).
Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families.
Washington, D.C., May 24, 2018 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, announces the availability of new research grants to support the study of eight rare diseases. The initial application deadline is July 16, 2018.