VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
This workshop was help during in May 2016. Presentations and report here, including on:
best practice guidelines in the context of rare disease European Reference Networks
methodology to appraise clinical guidelines for rare diseases
the power of networks in clinical practice guideline development
patient involvement in the development of rare disease standards of care in the Netherlands
principles for the engagement of people living with a rare disease in translational activities