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Be Better: Disease Awareness - KTBS.com - Shreveport, LA News, Weather and Sports

Be Better: Disease Awareness

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SHREVEPORT , La -

There are more than 25-million people in the United States battling a disease classified as rare and 75% of them are children. In fact 30% of rare disease patients die before the age of five.

Many times it is because patients and parents can not get the right diagnosis, quality information, appropriate medical care.

Young adults like, Madison Smith was born with a rare, inoperable tumor growing from her neck to her stomach.

Madison's mother madisonsfoundation.org. On the site parents find information on 550 rare pediatric diseases written by medical professionals and updated regularly. There is a glossary of medical terms and a way for parents to share with other parents dealing with the same rare disease.

Marcy says parents who have a child with a rare disease should always keep searching for new information and always plan for the future.

For more information about Madison's rare disease and other diseases

visit: madisonsfoundation.org

 

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