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Help Desk » Conditions »
Rare Disorders
There are more than 1,150 rare disease listed in the National Organization for Rare Disorders database. We can only hope to scratch the surface, but here are some resources we've gathered to help you learn more.
Entries
Cooley's Anemia Foundation
Dedicated to providing information and support to individuals with thalassemia, the CAF is a comprehensive resource for patients, families, donors, practitioners and volunteers.
If you're looking for more information about thalassemia and related disorders, head here. Learn more about diagnosis, treatment and local support options.
Interstitial Cystitis Association
The ICA is dedicated to "offering information and support to IC patients and their families, educating the medical community about IC, and promoting research to find effective treatments and, ultimately, a cure for IC."
Head here for all things IC, including a comprehensive index of medical and pharmaceutical terms for those living with the condition.
Myasthenia Gravis Foundation of America
The MGFA is dedicated to providing care and finding an eventual cure for MG, a neuromuscular disorder.
Peruse their site for information on MG symptoms, diagnosis and treatment. Learn about advocacy and volunteer opportunities, and head to the FAQs to get answers to common questions about MG.
National Organization for Rare Disorders
A federation of health organizations devoted to rare disorders, NORD provides comprehensive information to folks seeking more information or support for a variety of uncommon conditions.
A great place to begin for babes in search of information about a rare disease or condition. Check out their list of member organizations for a huge array of support options.
Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance is dedicated to research, treatment, care, support and advocacy on behalf of individuals living with tuberous sclerosis.
Find information about this genetic disorder and treatment options, connect with local resources, stay up to date on advocacy efforts and learn how you can get involved.
