The October 2018 Cagliari conference empowered Sardinian rare disease patient associations through training and collaboration.
SAVE THE DATE – LA VOCE DEL PAZIENTE RARO, OCTOBER 26, 2018 Read More »
The November 2018 ERN-LUNG webinar shared expertise on clinical trials network development using cystic fibrosis as example.
Save the Date – ERN Lung Webinar, 20th of November from 14h – 16h CET Read More »
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 »
Modern Management of Inherited Metabolic Disorders course hosted by Recordati on in Rio de Janeiro, Brazil 18 – 20 October 2018.
Modern Management of Inherited Metabolic Disease Read More »
Scientific and technological advancements are rapidly enabling neonatal screening for ever more congenital conditions to become available.
11th ISNS Meeting, Reliability of Screening Results Read More »
The October 2018 #rarestars campaign showcased healthcare professionals dedicated to improving Gaucher disease patient care.
International Gaucher Day. Follow the campaign Read More »
MetabERN invites IMD patients and families to complete a survey on their needs and expectations. Available in 7 languages.
Survey for Patients. Let us hear your voice. Read More »
The EHFG 2018 conference (3-5 Oct) will focus on health in the UN’s Sustainable Development Goals. Early registration ends 13 July.
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 »
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 »
The 2018 course explored connections between inherited vitamin B disorders and neurodegenerative diseases for medical specialists.
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 »
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