CPMS for New Users, 16th October 2018
The October 2018 webinar provided essential training for new MetabERN members using the Clinical Patient Management System.
CPMS for New Users, 16th October 2018 Read More »
Events
SAVE THE DATE – LA VOCE DEL PAZIENTE RARO, OCTOBER 26, 2018
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 »
Save the Date – ERN Lung Webinar, 20th of November from 14h – 16h CET
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 »
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 »
Modern Management of Inherited Metabolic Disease
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 »
International Gaucher Day. Follow the campaign
The October 2018 #rarestars campaign showcased healthcare professionals dedicated to improving Gaucher disease patient care.
International Gaucher Day. Follow the campaign Read More »
Survey for Patients. Let us hear your voice.
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 »
HEALTH AND SUSTAINABLE DEVELOPMENT – BOLD POLITICAL CHOICES FOR AGENDA 2030, 3-5 OCTOBER 2018
The EHFG 2018 conference (3-5 Oct) will focus on health in the UN’s Sustainable Development Goals. Early registration ends 13 July.
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 »
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.
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 »
