Table 1: Regional and international rare disease organizations.

Organisations	Web addreess
Asian Pacific Alliance of Rare Disease Organisations (APARDO)	https://www.apardo.org/
Eurordis	http://www.eurordis.org/
Rare Diseases International (RDI)	https://www.rarediseasesinternational.org/
Global Genes	https://globalgenes.org/
International Rare Diseases Research Consortium	https://www.irdirc.org/
National Organisation for Rare Disorders (NORD)	https://rarediseases.org/
Iberioamerican Alliance for Rare Diseases (ALIBER)	https://aliber.org/web/en/
UN NGO Committee on Rare Diseases	https://www.ngocommitteerarediseases.org/
International Collaboration on Rare Diseases and Orphan Drugs (ICORD)	http://www.icord.es/
WHO Collaborative Global Network for Rare Diseases (CGN4RD)	https://www.rarediseasesinternational.org/rdi- signs-memorandum-of-understanding-with- the-world-health-organization/