A Helping Hand for Rare, Unidentified Diseases

Calling all patients with a rare unidentified disease! You may be able to receive medical research treatment for free. No, this is not some hokey internet ad promising a miracle cure. This is a bona fide offer from the National Institute of Health, who is seeking people with undiagnosed, unique health issues to participate in their new Undiagnosed Disease Program.

There are thousands of people all over the country, traveling back and forth to doctor's offices and hospitals in search of answers for their unusual health problems; maladies that no one has been able to identify or find a cause for. If you happen to be one of those people, still seeking answers to problems that no doctor has been able to diagnose, this may be your chance at diagnosis. The pilot program will be recruiting 100 patients annually that meet the specific requirements established by the National Health Institute (NIH), and those chosen will have access to the expertise of over 25 of the NIH's senior attending physicians, with specialties in endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics. The Undiagnosed Diseases Program is being led by Dr. Gahl, an expert on rare genetic diseases, with recruitment being handled by two nurse practitioners. The goals of the program are to improve disease management and to advance general medical knowledge.

Some researchers believe patients with rare diseases tend to be abandoned, with doctors reaching so many dead ends and ultimately unable to help. Through the research study, doctors are hoping to reach some of these people. By handing over their care, patients will benefit from free health care and research that could lead to a diagnosis for their mysterious condition.

PATIENTS WANTING TO BE A PART OF THE PILOT PROGAM MUST:

1. Have a doctor's referral for the patient to NIH
2. Have a disease that doctors have been unable to identify
3. Send all medical files to NIH for evaluation

Patients who are accepted will go through a week's worth of free additional testing at the Clinical Center.
The program does not promise to diagnosis patients with rare diseases, but hopes to gain research and knowledge not already known in regards to rare diseases, while allowing patients to receive treatment from well-known specialists. The study doesn't limit patients to only those who have been seeking help for many years, but it will also include those with new rare diagnosed ailments.

For more information, see http://rarediseases.info.nih.gov/undiagnosed or call 1-866-444-8806.