Additional Resources
The National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders is a nonprofit organization committed to helping rare disease patients and the patient advocacy groups for rare disease.
Hide and Seek Foundation for Lysosomal Disease research
Hide and Seek Foundation is an organization of scientists, physicians, patients, families and friends of people affected with Lysosomal Diseases that supports critical, cutting-edge scientific research to cure these conditions.
Genetics Home Reference
http://ghr.nlm.nih.gov/
This is the National Library of Medicine that provides consumer oriented information about genetic conditions, including a Help Me Understand Genetics Handbook.
Medline Plus: Rare Diseases Pathfinder
http://www.nlm.nih.gov/medlineplus/rarediseases.html
Medline Plus is a consumer health information web site provided by the National Library of Medicine. The page contains links to U.S. Government web sites with information about rare diseases. There is also an option to search for articles in medical journals using the PubMed search interface.
European Organisation for Rare Diseases
http://www.eurordis.org/
The European Organisation for Rare Diseases the EU counterpart to NORD in the US – it helps represent rare disease organizations from 24 countries.