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.
The 16th International Conference on Rare Diseases «Understanding rare diseases» will be held at the Exploris Training and Recreation Centre in Serock between 28 June and 1 July 2018.
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.
This course is firstly dedicated to adult and paediatric neurologists, to specialists in biochemical genetics and to nutritionists interested in the nutrition role of B vitamins.
CDG are a family of rare metabolic diseases with low visibility, without targeted therapeutic solutions and generally unknown among the medical and scientific communities.
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.
The members of the “conect4children” (c4c) initiative today announced the start of a large collaborative paediatric network that will facilitate the development of new drugs and other therapies for the entire paediatric population in Europe.
Chafea organised a kick-off meeting for five new rare diseases’ registries in Luxembourg on the 17th of April 2018, which involved 40 participants.
We are pleased to announce that the EHFG would like to once more offer a number of Young Forum Gastein scholarships to attend the 21st EHFG.