Delaware’s bill passage for rare disease advisory council applauded

Council gives patients platform to address concerns: Lt. Gov. Bethany Hall-Long

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
Illustration of Capitol building, with the word

Delaware’s lieutenant governor, Bethany Hall-Long, PhD, is applauding the passage in the state House of Representatives of a measure that would create the state’s first Rare Disease Advisory Council (RDAC).

The legislation would establish an advisory body for state residents who have a rare disease, such as Lambert-Eaton myasthenic syndrome, which would help identify and address impediments to care. An overarching goal is to foster robust discussions around rare disease study, resources, and best practices. Gov. John Carney is expected to sign the legislation.

Hall-Long, who has a nursing background, led efforts to introduce the bill, which was sponsored by Sen. Nicole Poore and Rep. Krista Griffith.

“Delawareans living with rare diseases should never suffer in silence,” Hall-Long said in a press release. “This new advisory council will give patients, caregivers, and families a platform to address concerns and create a foundation for further innovation to create treatments and improve services.”

Recommended Reading
This illustration shows the U.S. Capitol, home to the federal government's legislative branch.

SMART Prices Act could lead to fewer rare disease therapies: Study

Goal to ‘break down barriers and improve the quality of life’ for patients

“I am so thankful for the leadership of Sen. Poore and Rep. Griffith and the advocacy of the National Organization for Rare Disorders. Together, we can break down barriers and improve the quality of life for our neighbors suffering from rare diseases,” she said.

Under the Delaware bill, the council would comprise stakeholders from across the rare disease community, including elected officials, healthcare providers, scientists, patients, and caregivers.

Issues surrounding the approximately 7,000 rare disorders known to exist include misdiagnoses, healthcare costs, a lack of specialized care, and treatment availability and access. Between 25 million and 30 million U.S. residents are thought to have a rare disease, 90% of which have no federally approved treatment.

“An estimated one in ten Americans is living with a rare disease, but many patients struggle to find knowledgeable health care providers with relevant expertise and access to necessary care and treatment for their complex condition,” said Heidi Ross, vice president of policy and regulatory affairs at the National Organization for Rare Disorders (NORD).

“NORD is thrilled to see Delaware join the growing number of states looking to support their rare disease community by establishing a Rare Disease Advisory Council and we are so thankful to Senator Poore, Representative Griffith and Lt. Governor Hall-Long for their efforts to create an RDAC in Delaware,” Ross said.

If the legislation is made law, Delaware would become the 27th state nationwide to have established a RDAC. Last month, Maryland became the most recent state to form such an entity to help guide lawmakers on rare disorders. The first council was established in 2015 in North Carolina. Five years later, NORD established Project RDAC, an effort to get more councils created and fortify existing ones.