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What does it mean to be an undiagnosed patient?

What does it mean to be an undiagnosed patient?

Undiagnosed patients include those who are “not yet diagnosed” because they have not been referred to the appropriate medical specialist as well as patients who have a condition not previously described and for which a diagnostic test is not yet available.

What to do for a child with an undiagnosed condition?

See below for additional information and supportive resources for individuals with an undiagnosed condition and their families. Syndromes Without A Name (SWAN) is a supportive organization for families of children who have undiagnosed, unnamed conditions, or who are still looking for a diagnosis.

Is there an organization for people with Undiagnosed Diseases?

Yes. See below for additional information and supportive resources for individuals with an undiagnosed condition and their families. Syndromes Without A Name (SWAN) is a supportive organization for families of children who have undiagnosed, unnamed conditions, or who are still looking for a diagnosis.

Are there any Undiagnosed Diseases at the NIH?

2. NIH Undiagnosed Diseases Network In 2008, the NIH launched an Undiagnosed Diseases Program at its clinical center in Bethesda, Maryland, as a research program that accepted only a limited number of patients.

Is there such a thing as an undiagnosed neurological disorder?

It explains the process of getting a diagnosis and why neurological conditions are sometimes difficult to diagnose. It is important to note that medically unexplained neurological symptoms or functional neurological disorders (FND) are separate from undiagnosed conditions.

Can a person be undiagnosed with a serious disease?

Although being diagnosed with a serious condition can be hard, not receiving a definite diagnosis can be even more difficult to deal with. Feeling anxious about being undiagnosed is understandable. Doctors may not be able to give you answers about the future, including how your symptoms will progress, which may make you feel insecure.

What to do if your brain is undiagnosed?

People who are not yet diagnosed, or who have an undiagnosed condition, often experience neurological symptoms which are changeable or do not match the symptoms for any condition that doctors recognise. It is important to listen to your body and to keep a diary of your symptoms so you can communicate them clearly to your consultant.

How does the undiagnosed disease network help patients?

“The Undiagnosed Disease Network has a whole program of model organisms, so if we find a genetic change in someone we think is associated with the condition, we have resources to put that change in a model to see if it actually changes the system in that organism. It helps us understand if that is a cause in our patients,” she explains.