Annual MetabERN Board meeting starting on Thursday 4 April (start time 14.00) to Saturday 6 April (finishing at 13.00).
4th World Conference on Congenital Disorders of Glycosylation (CDG) for families and professionals: "The CDG road: from diagnosis to therapies" Lisbon, Portugal - 26 and 27 July 2019.
We successfully managed to create the Patient Board, which represents 44 patient groups established in 17 countries across all disease areas covered by MetabERN. We have therefore formed a Patient Steering Committee that will work hand-in-hand with the Medical Steering Committee to ensure that MetabERN is a truly person-centered European Reference Network. Now that a sound governance structure is in place, we are developing an Action Plan that will be discussed at the next Patient Steering and Executive Committees Meeting on 12 January in Brussels.
The E.S.PKU Conference 2018 will take place, at Hotel NH Venezia Laguna Palace, Venice, Italy, from November 1st to November 4th.
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.
The #IGD2018 #rarestars campaign will focus upon doctors, nurses, scientists, patient advocates and those involved in the pharmaceutical industry, who all work hard to improve the quality of life for the entire Gaucher patient community.
The primary aim of the Fabry expert meeting is to facilitate collaboration between patient organisations around the world to support those affected by Fabry disease.
The MPS Society is holding an expert meeting in Northampton, England.
The annual meeting will be focusing on the achievements of the first year of MetabERN activities, the definition of the final report, the starting and planning of the second year of activities...
The European Cystinosis Conference will take place in Berlin this year between the 13th and 15th of July.