1 Annual Kentucky Rare Disease Day
28 February 2017
700 Capital Ave, Frankfort, Kentucky 40601, Kentucky, USA
Hosted by Jennifer's GP House
Registration for event is:
1st Annual Kentucky Rare Disease Day!
We are pleased to announce Governor Matt Bevin has declared a Day of Proclamation for Kentucky rare disease patients 2/28/17
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 this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 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.
Elizabeth Hoey NORD - Educational Initiatives Coordinator
Guest speaker: Thomas L. Abell, MD UofL Gi Motility Clinic – Gastroparesis
Dr. Patrick Lowe - Lowe Chiropractic & Wellness - EDS
Senator Julie Raque Adams - Chair of H&W Senate
Representative Addia Wuchner - Chair of H&W House
Representative Tom Burch – past chair of Health and Welfare Committee
Jennifer Dunegan - Jennifer's GP House
Robin Rider-Osborne -- Rare Disease - Marinesco-Sjorgen Syndrome
Gary Bowman, plasma cell leukemia patient
Rebecca Weinhandl - Rare Disease - Infantile spasms/epileptic spasm
Brittney Lindsey - Rare Disease - Mitochondrial FARS2