The E.S.PKU Conference 2018 will take place, at Hotel NH Venezia Laguna Palace, Venice, Italy, from November 1st to November 4th.
This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).
The EU legal framework for medicines for human use is intended to ensure a high level of public health protection and to promote the functioning of the internal market, and includes measures that encourage innovation.
On November 3rd the first meeting of the subnetwork for Lysosomal Storage Diseases (LSDs) of MetabERN will take place in Rotterdam, the Netherlands.
The Romanian Foundation for Lysosomal Diseases (FRBL), founded in 1998 in Cluj-Napoca, has marked 20 years since its inception.
A Webex aimed to reach potential new CPMS users in MetabERN.
Il progetto è rivolto esclusivamente alle Associazioni di pazienti con malattia rara della Sardegna e promuove interventi di sensibilizzazione, formazione, accompagnamento e comunicazione per favorire l’azione delle organizzazioni dei pazienti e migliorare la situazione dei malati rari nelle regioni del Sud, attraverso un processo di empowerment individuale, organizzativo e di comunità.
Patient-centered research tool to increase knowledge on immune system (dys)function among CDG children and adults - The Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.
ERN-LUNG is organizing a webinar on how to set up a clinical trials network.
Effective ways of Investing in Health, the Expert Panel will maintain a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area.