We are pleased to announce the forthcoming 12th meeting of the Brains for Brain Foundation (B4B).
French and Canadian scientists make discovery that could affect diagnosis, genetic counselling and therapeutic approaches in patients with a rare condition.
We are glad to announce that the first MetabERN virtual patients consultation using the Clinical Patient Management System (CPMS) successfully took place on 15 January 2018. A second one is already scheduled for mid-February.
According to the letter sent to all the ERN Coordinators by Andrzej Rys (Director responsible for health systems, medical products and innovation Directorate-General for Health and Food Safety, European Commission), we would like to draw your attention to the difference between the purposes behind the two primary information systems provided for use by the European Reference Networks.
The development of rare diseases therapies requires the right regulatory, economic and political ecosystem to ensure that investments are made in areas where research would not otherwise be carried out.
This symposium, held from the 5th – 9th of February 2018, is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians [...]
MetabERN held its first meeting with Patient and Family Associations on the 13th of January 2018.
Rare Disease Day takes place on the last day of February each year. It is an international event, which aims to raise awareness amongst the general public and decision-makers.
CDG & Allies - PPAIN are very pleased to inform the lauch of the 4th edition of the Liliana Scientific Initiation Scholarship.
The Portuguese Association for CDG (APCDG) are attending the USA CDG Family Conference. They will be giving a talk on their international research network CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN).