Undiagnosed Diseases Registry Act of 2009

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Undiagnosed Disease Program
Launched by the
National Institute of Health

Researching Undiagnosed Conditions

Syndromes Without A Name USA is a non-profit organization dedicated to providing support to the families of children living with an undiagnosed medical condition

What is a Syndrome?

 A Syndrome is a group of signs, symptoms, or features that occur together and create a picture which may suggest the presence of a particular medical condition or disorder.

Symptoms are subjective evidence of a medical condition that are experienced by a patient and reported in the medical history such as pain, nausea, or dizziness.

Signs are objective evidence of a disorder that a physician or nurse can recognize during a physical examination such as wheezing, visual impairment, or a seizure.

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· Promote policies that will  improve the quality of life, health, and welfare of those lacking a diagnosis.

· Provide educational information, programs and support through our newsletter, emails, online support group, and website.

· Help patients and their families obtain benefits, support services, insurance     coverage, and medical programs.

· Create a database of undiagnosed  syndromes that can be used by physicians as a tool for identifying  “unique” conditions.

· Connect with international groups to raise public awareness and understanding of children living with undiagnosed disorders.

· Create a network of medical professionals who can offer advice, support, or help.