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Resources to Find a Physician

Disease Specific Patient Organizations

If you have a diagnosis and are looking for a doctor who specializes in your disease NORD always recommends checking with the disease specific patient group, if one exists, for this disease. These organizations often have more information about the experts on their disease or the resources to help you find them.

To find the contact information for the patient organization you can do a free disease search in NORD’s organizational database. Another place to look is Orphan Net.

Un-Diagnosed Patients

If you do not have a diagnosis the following organizations may be able to help you:

In Need of Diagnosis, Syndromes Without A Name (SWAN) or the Undiagnosed Diseases Program at the NIH.

Additionally, NIH put together this fact-sheet that may be useful.

Other Resources to Find a Physician

The Genetic and Rare Diseases Information Center (GARD) at NIH put together this information page on how to find a physician.

In general, GARD can be accessed as an additional resource.

Tips for Searching the Internet

General internet searches can produce some great results, but it also can uncover outdated information or incorrect facts from un-trusted sources. The following resources can be used to help you determine how to conduct quality searches and how to determine if the information you have found is trustworthy.

EURORDIS (Rare Diseases EUROPE) put together this fact sheet on How to find quality health information on the internet.

The Genetic Alliance created this Trust it or Trash it tool to help you think critically about the quality of health information.

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