CDG are a family of rare metabolic diseases with low visibility, without targeted therapeutic solutions and generally unknown among the medical and scientific communities.
May 16th is World Congenital Disorders of Glycosylation (CDG) Awareness Day Read More »
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.
Chafea organised kick-off meeting for five new rare diseases’ registries Read More »
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.
The April 2018 UCL conference gathered international experts to explore innovative treatments for rare inherited metabolic disorders.
6th Novel Therapies for Inherited Metabolic Diseases Meeting, London, 28th April 2018 Read More »
The topics of the 2018 Academy will be: Lysosomal storage disorders, Peroxisomal disorders, Purine and Pyrimidine disorders.
SSIEM Academy Course, London, 23rd-24th April 2018 Read More »
The ISIMD Annual Conference 2018 is on Friday 20th April 2018 in the Pillar Room, Rotunda Hospital.
Irish Society of IMD Annual Conference, Dublin, 2018 Read More »
April 2018 conference in Northampton brought together experts and families to discuss MPS I and II management and treatment options.
MPS I and II Expert and Patient Meeting, 28-29 April 2018 Read More »
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…
Annual MetabERN Meeting, FRANKFURT at the Lindner Congress Hotel on April 9-10th, 2018 Read More »
Health Commissioner Andriukaitis evaluates the first year of ERN operations and outlines key challenges for rare disease networks.
RARE DISEASE NETWORKS, ONE YEAR IN Read More »
May 2018 postgraduate training in Nierstein offered comprehensive education on LSDs with leading experts for early-career physicians.
A critical request for blood and urine samples from metabolic disorder patients to maintain high quality diagnostic laboratory standards.
ERNDIM’s plea for samples of Inborn Errors of Metabolism patients Read More »
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