European Reference Networks (ERNs) Accelerating and Improving Diagnosis for Rare Disease Patients
In February 2018, a European Parliamentary Meeting gathered healthcare leaders to improve diagnostic timelines for rare diseases.
Workshop para Famílias e Profissionais CDG/Workshop for CDG Families and Professionals
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 »
Position statement from the European Reference Networks (ERNs) Network Coordinators
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 »
SSIEM ANNUAL SYMPOSIUM: “Old Roads, New Connections”
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 »
12TH BRAINS FOR BRAIN FOUNDATION (B4B) INTERNATIONAL WORKSHOP, 8-10 MARCH 2018, FRANKFURT–GERMANY
The 2018 Brains for Brain Foundation workshop in Frankfurt united experts to advance research in pediatric neurodegenerative disorders.
NEW LIGHT SHINES ON OUR UNDERSTANDING OF RARE DISEASES
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 »
The first MetabERN virtual patients consultation has successfully taken place
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 »
26th EURORDIS Round Table of Companies Workshop, 21 February 2018
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 »
14th Annual WorldSymposium: Lysosomal Diseases Research
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 held its first meeting with Patient and Family Associations
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 »
Rare Disease Day 2018
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 »
9th Annual SBP Rare Disease Symposium & CDG Family Conference
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 »
