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Patients who remain undiagnosed despite extensive evaluation and testing may now apply online to the NIH Undiagnosed Diseases Network (UDN). Applicants to the UDN will need support from their primary health care providers in the form of a referral letter summarizing the medical problems, treatments, and testing.
The UDN seeks to provide diagnosis for patients who remain “medical mysteries” despite the efforts of skilled clinicians, as a result of having diseases that are extremely rare, have not previously been described, or are unrecognized forms of more common diseases.
The online portal, known as the UDN Gateway, will streamline the application process for patients and their physicians. Applications should be submitted through the Gateway rather than to individual UDN clinical sites. Qualified applicants who can’t afford required baseline testing will be referred by UDN staff to the National Organization for Rare Disorders (NORD) for possible financial assistance through a program administered by NORD for the UDN.
The UDN is an extension of the NIH Undiagnosed Diseases Program established in 2008 at the NIH Clinical Center in Bethesda. Through that program, more than 800 patients have been evaluated and approximately 25% have received some level of clinical, molecular, or biochemical diagnosis.
In 2015, six additional clinical sites were opened to broaden the expertise of the program and allow additional patients to participate. The new sites are:
· Baylor College of Medicine, Houston, TX
· Duke Medical Center, Durham, NC, with Columbia University, New York City
· Harvard Teaching Hospitals, Boston, MA
· Stanford Medical Center, Stanford, CA
· University of California at Los Angeles Medical Center
· Vanderbilt University Medical Center, Nashville, TN
The network also includes two DNA-sequencing facilities—one at the Baylor College of Medicine and the other at the Hudson/Alpha Institute for Biotechnology in Huntsville, AL.
Patients who remain undiagnosed despite extensive evaluation and testing may now apply online to the NIH Undiagnosed Diseases Network (UDN). Applicants to the UDN will need support from their primary health care providers in the form of a referral letter summarizing the medical problems, treatments, and testing.
The UDN seeks to provide diagnosis for patients who remain “medical mysteries” despite the efforts of skilled clinicians, as a result of having diseases that are extremely rare, have not previously been described, or are unrecognized forms of more common diseases.
The online portal, known as the UDN Gateway, will streamline the application process for patients and their physicians. Applications should be submitted through the Gateway rather than to individual UDN clinical sites. Qualified applicants who can’t afford required baseline testing will be referred by UDN staff to the National Organization for Rare Disorders (NORD) for possible financial assistance through a program administered by NORD for the UDN.
The UDN is an extension of the NIH Undiagnosed Diseases Program established in 2008 at the NIH Clinical Center in Bethesda. Through that program, more than 800 patients have been evaluated and approximately 25% have received some level of clinical, molecular, or biochemical diagnosis.
In 2015, six additional clinical sites were opened to broaden the expertise of the program and allow additional patients to participate. The new sites are:
· Baylor College of Medicine, Houston, TX
· Duke Medical Center, Durham, NC, with Columbia University, New York City
· Harvard Teaching Hospitals, Boston, MA
· Stanford Medical Center, Stanford, CA
· University of California at Los Angeles Medical Center
· Vanderbilt University Medical Center, Nashville, TN
The network also includes two DNA-sequencing facilities—one at the Baylor College of Medicine and the other at the Hudson/Alpha Institute for Biotechnology in Huntsville, AL.
Patients who remain undiagnosed despite extensive evaluation and testing may now apply online to the NIH Undiagnosed Diseases Network (UDN). Applicants to the UDN will need support from their primary health care providers in the form of a referral letter summarizing the medical problems, treatments, and testing.
The UDN seeks to provide diagnosis for patients who remain “medical mysteries” despite the efforts of skilled clinicians, as a result of having diseases that are extremely rare, have not previously been described, or are unrecognized forms of more common diseases.
The online portal, known as the UDN Gateway, will streamline the application process for patients and their physicians. Applications should be submitted through the Gateway rather than to individual UDN clinical sites. Qualified applicants who can’t afford required baseline testing will be referred by UDN staff to the National Organization for Rare Disorders (NORD) for possible financial assistance through a program administered by NORD for the UDN.
The UDN is an extension of the NIH Undiagnosed Diseases Program established in 2008 at the NIH Clinical Center in Bethesda. Through that program, more than 800 patients have been evaluated and approximately 25% have received some level of clinical, molecular, or biochemical diagnosis.
In 2015, six additional clinical sites were opened to broaden the expertise of the program and allow additional patients to participate. The new sites are:
· Baylor College of Medicine, Houston, TX
· Duke Medical Center, Durham, NC, with Columbia University, New York City
· Harvard Teaching Hospitals, Boston, MA
· Stanford Medical Center, Stanford, CA
· University of California at Los Angeles Medical Center
· Vanderbilt University Medical Center, Nashville, TN
The network also includes two DNA-sequencing facilities—one at the Baylor College of Medicine and the other at the Hudson/Alpha Institute for Biotechnology in Huntsville, AL.
