ORPHANET latest resources

Orphanet has developed and produced several important resources for the rare disease ecosystem. Here is a list of the latest news:

• ORPHAcodes. Rare disease-specific coding systems are key for data collection and analysis, ORPHAcodes recognise more than 6,000 RD – implementing them fulfills patient needs, aids monitoring, and more. Read about the current state of ORPHAcode implementation here.
• Orphanet Report Series on rare disease drugs in Europe to collect info and data on how many orphan drugs have marketing authorization in Europe and how many drugs without orphan status are used in rare diseases.
• Orphanet has more than 100 emergency guidelines available to guide healthcare professionals in the emergency care for patients with rare disease.
• Orphanet Nomenclature 2023 pack is available NOW in 9 languages, important files to implement ORPHAcodes in health information systems.