De portaalsite voor zeldzame ziekten en weesgeneesmiddelen

• Startpagina
• Andere informatie
• Orphanet procedures

Orphanet procedures

General procedures

• Orphanet standaard werkvoorschriften (Orphanet Standard Operating Procedures)
• Procedureregels voor de Internationale Adviesraad
• Procedureregels voor de Genetische Adviesraad van Orphanet

Procedures concerning the nomenclature

• Orphanet nomenclature and classification of rare diseases
• Regels voor het coderen van zeldzame ziekten in ICD-10
• Naming rules for the rare disease nomenclature in English
  This document has been translated into Polish (2017) and Spanish (2018) and German (2019) and Japanese (2019)
• Nomenclature production in national language
• Linearization rules for Orphanet classifications

Procedures concerning the collection of information related to rare diseases

Scientific information

• Het opstellen en bijwerken van ziekte samenvattingen voor de Orphanet Encyclopedie voor professionals
• Orphanet inventory of genes related to rare diseases
• Epidemiological data collection in Orphanet
• Translation of the Disease Summary Texts of the Orphanet Encyclopedia for Professionnals
• Collection and dissemination of disease information for health professionals and the general public

Expert ressources

• Glossary and representation of terms related to diagnostic tests
• Data collection and registration of medicinal products intended for rare diseases in Orphanet
• Data collection and registration of expert centres in Orphanet
• Data collection and registration of patient organisations in Orphanet
• Data collection and registration of diagnostic tests in Orphanet
• Data collection and registration of research projects in Orphanet
• Data collection and registration of Clinicals trials in Orphanet
• Data collection and registration of patient registries in Orphanet
• Data collection and registration of biobanks in Orphanet