The 2018 Porto workshop brought CDG families and healthcare professionals together, featuring CDG pioneer Prof. Jaak Jaeken.
Workshop para Famílias e Profissionais CDG/Workshop for CDG Families and Professionals Read More »
Historical position statement from 24 ERN coordinators emphasizing the crucial need for European collaboration in rare disease treatment.
Position statement from the European Reference Networks (ERNs) Network Coordinators Read More »
The 2018 SSIEM Symposium in Athens gathered metabolic medicine experts to bridge established knowledge with emerging discoveries.
SSIEM ANNUAL SYMPOSIUM: “Old Roads, New Connections” Read More »
The 2018 Brains for Brain Foundation workshop in Frankfurt united experts to advance research in pediatric neurodegenerative disorders.
French-Canadian research team discovers “epi-cblC,” changing our understanding of how rare metabolic diseases can be inherited.
NEW LIGHT SHINES ON OUR UNDERSTANDING OF RARE DISEASES Read More »
MetabERN achieved its first virtual patient consultation via the Clinical Patient Management System, marking a new era in rare disease care.
The first MetabERN virtual patients consultation has successfully taken place Read More »
The 26th EURORDIS Workshop gathered experts to discuss improving incentives and frameworks for rare disease therapy development.
26th EURORDIS Round Table of Companies Workshop, 21 February 2018 Read More »
The 14th Annual WorldSymposium in San Diego united researchers and clinicians to advance understanding and treatment of lysosomal diseases.
14th Annual WorldSymposium: Lysosomal Diseases Research Read More »
MetabERN’s first meeting with Patient and Family Associations established a framework for collaborative rare disease care development.
MetabERN held its first meeting with Patient and Family Associations Read More »
The 2018 edition of Rare Disease Day united communities worldwide to raise awareness and support for people living with rare conditions.
Rare Disease Day 2018 Read More »
The 2018 SBP Rare Disease Symposium and CDG Family Conference showcased international collaboration in CDG research and patient support.
9th Annual SBP Rare Disease Symposium & CDG Family Conference Read More »
E-Rare’s 2018 funding call supports international research teams using multi-omic approaches to investigate rare disease mechanisms.
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