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).
We were deeply saddened to hear that the brave and inspiring Christine Lavery passed away on Tuesday 19th December 2017 in hospital surrounded by her family, following a brief illness. Christine has played an outstanding role in our Lysosomal storage diseases community and for the entire field of rare inherited diseases.
The 1st MetabERN meeting with Patient and Family Associations, which will be held at the Frankfurt Lindner Hotel, Germany, on 13th January 2018. The opinion of patient and family organisations is highly valued by the MetabERN as to build the foundation for developing long-term activities and programmes centred around high-quality patient care. The meeting represents […]
Funding transnational collaborative research through joint transnational calls is one of the major objectives of E-Rare. This is the most important and effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reducing the fragmentation of research in this field. E-Rare launches calls on a yearly basis. The topic […]