Finally!

[lmbutare]

I recently discovered that the NIH Office of Rare Diseases has started a program for people with undiagnosed illnesses! It is called the "Undiagnosed Diseases Program" and is available for application to come to the NIH for evaluation and hopefully diagnosis, potentially free of charge. I wish that this had been available during the 2 years that I was disabled and without a diagnosis, but thank goodness for the Mayo clinic. Anyway, I know a lot of us went undiagnosed for quite some time, so I thought it was really refreshing to find that they had started this program. I have copied quotations from the website and the link is attached, so make sure you share this with anyone you know who has a mystery diagnosis!

NORD Undiagnosed Diseases Program

"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 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

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program?s medical team.

For more information please call (866) 444-8806

Please do not send Undiagnosed Diseases Program-related email or submit medical records to the NIH Office of Rare Diseases. All communication should be handled through the Undiagnosed Diseases Program staff at the NIH Clinical Center."

[pat57]

That's good news............