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.
This is an event organised by the group of ICH researchers with invited external speakers. The event aims to stimulate development of new therapies for patients with Rare Disorders.
The topics of the 2018 Academy will be: Lysosomal storage disorders, Peroxisomal disorders, Purine and Pyrimidine disorders
The ISIMD Annual Conference 2018 is on Friday 20th April 2018 in the Pillar Room, Rotunda Hospital.