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HOPE is a member of the Orphanet International Advisory Board. The body provides recommendations and advises the Orphanet Management Board on the overall strategy of the initiative.

Orphanet gathers resources and works to expand our knowledge of rare diseases so as to improve diagnostic tools and methods, care, and treatment. It aims to provide high-quality information on rare diseases and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAnumber), essential to improving the visibility of rare diseases in health and research information systems.

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997. This initiative became a European endeavour in the year 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.