Resources for Finding a Diagnosis


National Institutes of Health Undiagnosed Diseases Program (Website)

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program (UDP), a clinical site of the Undiagnosed Diseases Network, pursues two goals:

  • To provide answers to patients with mysterious conditions that have long eluded diagnosis
  • To advance medical knowledge about rare and common diseases


National Institutes of Health Tips for the Undiagnosed (Website)

Trying to find an underlying diagnosis for many conditions can be a very long and frustrating experience. With more rare conditions, a diagnosis can often take many years. Although this can be incredibly difficult, the NIH has put together some helpful tips to help you navigate the process.


TGEN Center for Rare Childhood Disorders (Website)

TGen’s Center for Rare Childhood Disorders (C4RCD) applies the latest tools of genomic medicine to provide answers for parents wanting to identify the disease or disorder affecting their child.

Our faculty – in collaboration with a leading physician in the area of childhood disease – are dedicated to finding the underlying genetic causes of a child’s illness.


In Need of Diagnosis, Inc (Website)

In Need Of Diagnosis, Inc. (INOD) advocates for increased accuracy and timeliness of diagnoses and is a resource center for those who suffer with illnesses that have eluded diagnosis.