The National Organization for Rare Disorders (NORD) is a US-based patient advocacy organisation dedicated to individuals with rare diseases and the organisations that support them.
NORD serves as the hub of the rare disease community, leading efforts to connect patients and patient organizations with other stakeholders and driving progress for all.
While the majority of NORD’s services and programmes are based in the US, they do have international partnerships, up-to-date disorder information: https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/ and a comprehensive list of rare disorder support organisations: https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/
