About Rare Diseases

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What makes a disease rare?

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. This definition was created by Congress in the Orphan Drug Act of 1983, which created financial incentives to encourage companies to develop new drugs for rare diseases.

There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million.

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Hypophosphatasia

Hypophosphatasia (HPP) is a rare genetic disorder characterized by the abnormal development of bones and teeth. These abnormalities occur due to defective mineralization required for hardness and strength, resulting in bones that are soft and prone to fracture and patient often loss their teeth at an early age. Caused by mutations in the tissue of the ALPL gene, HPP has six major clinical forms. Some children will develop severe complications early in life, while others have mild disease that may improve during young adult life.

To learn more about HPP, click here to visit the National Organization for Rare Disorders (NORD)

Support for other Rare Diseases IN THE FUTURE

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Our Favorite Resources

There are many resources out there, and we have our favorites. Below are websites and organizations that you can learn from and lean on for additional support & education.

NORD

GLOBAL GENES

ANGEL AID

RARE MAMAS

RARE CONNECT

MAMA TRAUMA BARBIE

SOFT BONES

RARE GURU

ASSOCIATION OF CHILD LIFE PROFESSIONALS

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