Alabama Rare Disease Advisory Council

SUPPORTING PEOPLE WITH RARE DISEASES
AND THEIR FAMILIES

Living with a rare disease is a unique experience that, for many, can often feel like traveling an uncharted path with unexpected twists and turns. You or a loved one may have lived with a rare disease for years. Or, you may be newly diagnosed or currently seeking a diagnosis. The good news is that hundreds of resources are available – both nationally and within Alabama – to help you find information, support, and understanding for the journey ahead.

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What is a Rare Disease?

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Achieving a Diagnosis

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About the Council

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SUPPORTING PEOPLE WITH RARE DISEASESAND THEIR FAMILIES

What is a Rare Disease?

Achieving a Diagnosis

About the Council

In the U.S., a rare disease is defined as a condition that affects fewer than 200,000 people.

There are estimated to be 7,000 rare diseases.

30 million Americans are estimated to be living with a rare disease. This figure is equivalent to one in 10 people in the U.S.

In Alabama, 400,000 people are living with a rare disease. This figure is equivalent to 8.2%of the state’s population

More than 90% of rare diseases do not yet have a treatment approved by the FDA

One in 33 babies in the U.S. is born with birth defects, which include rare diseases

The Alabama Newborn Screening program identifies on average 150 to 200 babies with a metabolic, endocrine, hematological or other congenital disorder.

SUPPORTING PEOPLE WITH RARE DISEASES
AND THEIR FAMILIES