Undiagnosed Diseases Network to Study New and Rare Genetic 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.

Prune Belly Syndrome Symptoms – Treatment – Complications – Prognosis
Prune belly syndrome is characterized by an absence of abdominal muscles, severe abnormality of the urinary tract and undescended testes

Source-Medindia

Coordinated Effort is Important in Fight Against Rare Diseases
Since there are very few cases of rare diseases reported in India, health ministries do not make an effort to know about them, says APJ Abdul Kalam, former President of India.

Steve Waugh Foundation Helps Victims with Rare Diseases
Steve Waugh foundation founded by the former Australian captain Steve Waugh renders help to victims who battle with rare diseases.