Governor Matt Bevin has declared a Day of Proclamation for Kentucky rare disease patients for February 28.
Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize a special event for legislators, legislative staff, the public and the media to take place from noon until 2 p.m. in the Capitol Rotunda in Frankfort.
Rep. Addia Wuchner will be among the speakers.
The purpose of this event is to raise awareness at the state level for the one in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed.
Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Kentucky.
The gathering is sponsored by N.O.R.D. (National Organization for Rare Disorders)
For registration for event click here.