Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

Undiagnosed Diseases Program

2:02 PM Posted In Edit This 2 Comments »
National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases Research (ORDR) and the NIH Clinical Center has organized an Undiagnosed Diseases Program in Bethesda, Maryland for patients that have a disease that has eluded their primary care physician(s) or have a rare disease. The program considers a rare disease to be one that has a prevalence of less than 200,000 U.S. affected individuals. This is a free program, and for those that qualify, travel, meals, and lodging may be paid for.

The program uses a combination of medical and scientific resources to achieve two goals:

    * Provide patients with answers to mysterious conditions that have eluded diagnosis.
    * To advance medical knowledge about rare and common diseases.

Medical specialists from areas such as: genetics, cardiology, dentistry, oncology, endocrinology, dermatology, rheumatology, immunology, mental health, nephrology, hematology, ophthalmology, neurology, laboratory medicine, pain and palliative care, bone disorders, immunology, primary immunodeficiency, pathology, pulmonology, primary immunodeficiency, internal medicine, pediatrics and hepatology participate in the program.

Read more about the program here

2 comments:

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