Resources are listed by region. If you would like to make a suggestion for adding a link to this page please email us at firstname.lastname@example.org
- Rare Voices Australia (RVA) is a unified voice for all Australians living with a rare disease.
- Genetic Alliance Australia is a organisation that facilitates support for those affected directly or indirectly by genetic conditions / rare diseases throughout Australasia.
- European Organisation for Rare Diseases is an alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
- European Society for Paediatric Research is oriented towards research which may improve child health.
- Contact is the only UK charity providing support and advice to parents whatever the medical condition of their child.
- UCL Great Ormond Street Institute of Child Health a world class centre for the study and treatment of childhood disease.
- Health on the Net offers a search facility for health information.
- Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge.
- National Organization for Rare Disease (NORD) is a United States of America support group for those with rare disease.
- Genetic and Rare Diseases Information Center (GARD) provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.