ALBANY, N.Y. — A bill in the state Legislature aims to raise awareness of rare diseases.
The bill would establish a Rare Disease Advisory Council within the state Department of Health. The council would be made up of experts, patients and caregivers.
They would identify best practices, address gaps in care and give recommendations to state lawmakers. The hope is the bill would help patients like Madeline Norton, a little girl from Long Island with a rare neurological disorder known as PKAN.
“Yesterday was my 30th birthday. And my only wish was to see meaningful progress in the rare disease community. Progress that would give me more time with my daughter,” said Kaitlin Norton, Madeline’s mother. “This rare disease council would be a powerful step.”
More than one million New Yorkers live with rare diseases. More than 95 percent of rare diseases don’t have FDA-approved treatments.
New state bill could bring progress to families dealing with rare diseases WHEC.com.
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