Kentuckians with rare diseases gain support through new advisory council

A new Kentucky Rare Disease Advisory Council will bring together the best minds in the Commonwealth to help raise awareness, secure funding and speed the development of treatments and medical protocols that lead to cures.

Gov. Matt Bevin today ceremonially signed a bill establishing the council which will help provide a focus to finding cures for the 7,000 known rare diseases that affect approximately 30 million men, women and children throughout the United States.

“The creation of the Rare Disease Advisory Council will provide an important mechanism to raise public awareness about rare diseases and develop centralized resources for patients, caregivers, and family members,” said Gov. Bevin. “The council will bring together medical professionals and experts from across the state to work on advancing research, diagnosis, and treatment efforts. Kudos to Sen. Raque Adams and the General Assembly for passing this legislation with overwhelming, bipartisan support.”

Gov. Bevin also presented a proclamation declaring August 2019 as Gastroparesis Awareness Month.

University of Louisville physicians and other health care providers were on hand for the ceremonial signing at the Novak Center for Children’s Health.

“We know all too well the challenges and hurdles that people with rare diseases face,” said Kim Boland, MD, interim chair of the Department of Pediatrics, University of Louisville School of Medicine. “The impact felt by patients and families who face these diseases is just as great as any resulting from more common maladies.”

A rare disease is defined as one that affects fewer than 200,000 people. Jennifer Dunegan is one of the few with the stomach condition gastroparesis. She and her husband Patrick created the support organization, Gastroparesis Support Services Inc. They also serve as ambassadors of the National Organization for Rare Disorders. Patrick Dunegan will now take on the role of inaugural chair of the new council.

“It an honor to advocate for all of those with rare diseases. Following my wife’s gastroparesis diagnosis in 2014, we knew it was important to join with others who face similar difficult rare disease health journeys,” Patrick said.

As part of his work in the council, Patrick said he hopes to secure funding for genetic testing for earlier diagnosis of rare diseases.