Delaware News

Lt. Governor Hall-Long Applauds House Passage of Bill to Create Delaware’s First Rare Disease Advisory Council

Lt. Governor Bethany Hall-Long | Office of the Lieutenant Governor | Date Posted: Tuesday, June 20, 2023


Delaware House passes Senate Bill 55

DOVER, Del. – On Tuesday, Lieutenant Governor Bethany Hall-Long released a statement following the House of Representatives’ passage of Senate Bill 55, legislation to create a new advisory body for Delawareans living with rare diseases.

Sponsored by Sen. Nicole Poore and Rep. Krista Griffith, Senate Bill 55 would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to treatment and care, fostering robust dialogue around research, resources, and best practices.

Under this bill, the council will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. There are approximately 7,000 known rare diseases, which can impact individuals in a variety of ways from lack of affordable and accessible treatment therapies to challenges with diagnosis and misdiagnosis.

“Delawareans living with rare diseases should never suffer in silence. 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,” said Lt. Governor Bethany Hall-Long, nurse and Ph.D. who led efforts to get the legislation introduced. “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.”

It is estimated that 25-30 million Americans suffer from a rare disease. If signed into law, Delaware would join 26 other states across the nation to have established a Rare Disease Advisory Council. More than 90% of rare disease do not have an FDA-approved treatment, according to the National Organization for Rare Disorders (NORD). Challenges with treatment options combined with unsustainable medical costs can negatively impact the care of an individual with a rare disease.

“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. 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,” said Heidi Ross, Vice President of Policy and Regulatory Affairs at the National Organization for Rare Disorders.

Senate Bill 55 now heads to Governor John Carney for his signature.

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Lt. Governor Hall-Long Applauds House Passage of Bill to Create Delaware’s First Rare Disease Advisory Council

Lt. Governor Bethany Hall-Long | Office of the Lieutenant Governor | Date Posted: Tuesday, June 20, 2023


Delaware House passes Senate Bill 55

DOVER, Del. – On Tuesday, Lieutenant Governor Bethany Hall-Long released a statement following the House of Representatives’ passage of Senate Bill 55, legislation to create a new advisory body for Delawareans living with rare diseases.

Sponsored by Sen. Nicole Poore and Rep. Krista Griffith, Senate Bill 55 would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to treatment and care, fostering robust dialogue around research, resources, and best practices.

Under this bill, the council will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. There are approximately 7,000 known rare diseases, which can impact individuals in a variety of ways from lack of affordable and accessible treatment therapies to challenges with diagnosis and misdiagnosis.

“Delawareans living with rare diseases should never suffer in silence. 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,” said Lt. Governor Bethany Hall-Long, nurse and Ph.D. who led efforts to get the legislation introduced. “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.”

It is estimated that 25-30 million Americans suffer from a rare disease. If signed into law, Delaware would join 26 other states across the nation to have established a Rare Disease Advisory Council. More than 90% of rare disease do not have an FDA-approved treatment, according to the National Organization for Rare Disorders (NORD). Challenges with treatment options combined with unsustainable medical costs can negatively impact the care of an individual with a rare disease.

“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. 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,” said Heidi Ross, Vice President of Policy and Regulatory Affairs at the National Organization for Rare Disorders.

Senate Bill 55 now heads to Governor John Carney for his signature.

image_printPrint


Graphic that represents delaware news on a mobile phone

Keep up to date by receiving a daily digest email, around noon, of current news release posts from state agencies on news.delaware.gov.

Here you can subscribe to future news updates.