Patient Centred Research Tool
A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.
Patient Centred Research Tool Read More »
Effective ways of Investing in Health, Expert Panel, 25 September 2018
The September 2018 Expert Panel hearing explored expanding European Reference Networks beyond rare disease healthcare delivery.
Effective ways of Investing in Health, Expert Panel, 25 September 2018 Read More »
NORD Launches RareInsights – 5 Myths About Orphan Drugs
An insightful analysis of five common myths about orphan drugs and their real impact on healthcare systems and rare disease treatment.
NORD Launches RareInsights – 5 Myths About Orphan Drugs Read More »
16th International Conference on Rare Diseases: Understanding Rare Diseases
The June 2018 conference on rare diseases held in Serock brought together experts to explore pathways for better disease understanding.
16th International Conference on Rare Diseases: Understanding Rare Diseases Read More »
6th Fabry Expert Meeting, 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.
6th Fabry Expert Meeting, 2018 Read More »
Inherited Vitamin Responsive Disorders: to the rescue of the Neurodegenerative Diseases, 2018
The 2018 course explored connections between inherited vitamin B disorders and neurodegenerative diseases for medical specialists.
May 16th is World Congenital Disorders of Glycosylation (CDG) Awareness Day
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 »
Launch of a new public-private partnership to improve clinical trial infrastructure to facilitate the development of new drugs for children in Europe
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 kick-off meeting for five new rare diseases’ registries
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 »
YOUNG FORUM GASTEIN SCHOLARSHIP – EUROPEAN HEALTH FORUM GASTEIN, 2nd October – 6th October 2018, Bad Hofgastein, Austria
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.
6th Novel Therapies for Inherited Metabolic Diseases Meeting, London, 28th April 2018
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 »
SSIEM Academy Course, London, 23rd-24th April 2018
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 »
