Online Resources

There are many resources available on the internet.  Here are a few that you might find helpful:

• Wikipedia: Rare Diseases
• National Organization for Rare Disorders
• About.com: Rare Diseases
• Office of Orphan Products Development (OOPD)
• Rare Diseases Clinical Research Network

The National institutes of Health database lets you look up diseases that have affected your friends and family:

• Genetic and Rare Diseases Information Center

If you would like to connect with other rare disease patients, www.RareShare.org is a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.