MANIFESTO FOR EU COVID-19 RESEARCH
MetabERN endorses open-access principles for EU-funded COVID-19 research to ensure rapid sharing of prevention and treatment findings.
MANIFESTO FOR EU COVID-19 RESEARCH Read More »
Clinical Patient Management System (CPMS) | New Videos
MetabERN releases educational videos explaining the Clinical Patient Management System features and data protection compliance.
Clinical Patient Management System (CPMS) | New Videos Read More »
COVID-19 Recommendations for all Rare IMD Patients and Caregivers
The COVID-19 pandemic is testing the resilience of robust health systems around the world. This may be impacting you in many different ways, such as creating additional anxiety or exacerbating other medical or therapy issues related to your Inherited Metabolic Diseases (IMD).
COVID-19 Recommendations for all Rare IMD Patients and Caregivers Read More »
European Joint Programme on Rare Diseases | Calls and Training Courses
Are you interested in calls and training courses of the European Joint Programme on Rare Diseases? Click here to discover what the EJPRD are planning.
European Joint Programme on Rare Diseases | Calls and Training Courses Read More »
World Congenital Disorders of Glycosylation (CDG) Day
May 16th is the World Congenital Disorders of Glycosylation (CDG) Day. The worldwide CDG community joins efforts around this day to put together global awareness and education.
World Congenital Disorders of Glycosylation (CDG) Day Read More »
10th ECRD | Online, 14-15 May 2020
ECRD 2020 overarching theme & six parallel themes, online on May 14-15, 2020 – “The journey of living with a rare disease in 2030”.
10th ECRD | Online, 14-15 May 2020 Read More »
U-IMD UPDATE 2020
MetabERN’s Unified Registry for Inherited Metabolic Diseases reaches 500 patient records milestone and seeks expanded network participation.
U-IMD UPDATE 2020 Read More »
Challenges in Diagnosis and Disease Management of MPS and Alpha-mannosidosis
On-time diagnosis is crucial for access to treatment and clinical trials, disease management, and to access the proper care services at the earliest of the disease possible.
Challenges in Diagnosis and Disease Management of MPS and Alpha-mannosidosis Read More »
16th International SPDM Symposium | 19-20 March 2020
International symposium in Lisbon explores new horizons in inherited metabolic disorders with world-leading experts and workshops 19-20 March 2020.
16th International SPDM Symposium | 19-20 March 2020 Read More »
European Working Group on Gaucher Disease Webinar
European Working Group on Gaucher Disease Webinar | Laboratory Diagnostics of Gaucher Disease – 11 Dec 2019 from 17:00-18:00 CET.
European Working Group on Gaucher Disease Webinar Read More »
Italian National Meeting for Fabry Patients | 28-29 March 2020
Patients and specialists of Anderson-Fabry disease will meet in Florence on March 28th-29th, for the Annual Italian Meeting organized by AIAF Onlus.
Italian National Meeting for Fabry Patients | 28-29 March 2020 Read More »
PRE-CLINICAL RESEARCH TO DEVELOP EFFECTIVE THERAPIES FOR RARE DISEASES
The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006.
PRE-CLINICAL RESEARCH TO DEVELOP EFFECTIVE THERAPIES FOR RARE DISEASES Read More »
