Rare disease advocates visit AL State House

Rare disease advocates visit AL State House
(Source: WSFA 12 News)
(Source: WSFA 12 News)

MONTGOMERY, AL (WSFA) - Alabama's state house hosted a group of advocates for Alabamians who suffer from rare diseases, which is characterized by having 200,000 or less patients.

The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®

"The time is now for our rare diseases to shine in the spotlight and for our voices to be heard," said state leader Swapna Kakani, speaking on behalf of NORD.

Many important decisions related to health care for rare disease patients are made at the state level, according to NORD. Decisions made by states include prescription drug cost-sharing, newborn screening coverage, Medicaid and Children's Health Insurance Program eligibility, and Medical Foods coverage.

Rare Disease Day serves to educate and inform the public, elected officials, legislative staff and the media, says NORD.

One in 10 Americans are infected with a rare disease according to the National Institute of Health.

"We do this to prevent others after us who are going to be unfortunately diagnosed with the same disease to prevent them from going through the same struggles that we go through every other, everyday," Kakani says.

Two-thirds of rare disease patients are children.

Amanda Thompson from Tuscaloosa, whose daughter suffers from a rare chromosome disorder, says, "I became a state leader because remaining silent does not raise awareness."

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