HARRISBURG, Pa. - According to the Global Genes Project over 300 million people worldwide have a rare disease. Wednesday, those people dealing with rare diseases met at the Capitol to raise awareness, show support for each other and form a caucus.
There are over 7,000 rare diseases. The National Institutes of Health say one in 10 Americans live with a rare disease. Kids are a majority of those patients. A new caucus aims to address rare disease issues in Pennsylvania.
Patients say they often feel alone. Kyle Bryant was diagnosed with Friedredeich's Ataxia, a life- shortening disorder when he was 17.
"When we were diagnosed we were sitting at home alone thinking we were the only ones who were having to deal with this situation and the contrast between that and the way I feel right now with the whole community coming together is amazing," he said.
NORD, the National Organization for Rare Disorders, planned the event.