Undiagnosed Diseases Network to Study New and Rare Genetic Diseases

The National Institutes Of Health (NIH) has just begun a new program to help doctors working with rare diseases.

There are a lot of rare diseases that strike a small number of people. The National Institutes Of Health (NIH) has just begun a new program to help doctors work with such patients.

The national institute combines resources at leading institutions across the country to identify the genetic causes of various conditions.

Churg-Strauss Syndrome: Causes, Symptoms, Diagnosis & Treatment
Churg-Strauss Syndrome is a rare disease characterized by inflammation of blood vessels that can restrict blood flow to vital organs.

Seven centers, including the NIH headquarters in Bethesda, Maryland, are participating in the Undiagnosed Diseases Network (UDN) for which a patient portal, called UDN Gateway, has been setup to recruit potential study subjects.

In addition, two DNA sequencing centers will be involved in providing genomic information gathered from patient samples.

The UDN Gateway provides a central place for patients to apply for the program. It’s an online platform. The program expects to sign up approximately fifty patients in each of the participating clinical facilities.

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Prune belly syndrome is characterized by an absence of abdominal muscles, severe abnormality of the urinary tract and undescended testes

Source-Medindia

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