Delaware News

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

Lt. Governor Bethany Hall-Long | News | Office of the Lieutenant Governor | Date Posted: Thursday, June 8, 2023


SB 55 passes the Delaware Senate.

DOVER, Del. – Lt. Governor Bethany Hall-Long applauds the Senate’s passage of Senate Bill 55, which creates a new advisory body for Delawareans suffering from rare diseases. 

Senate Bill 55, sponsored by Sen. Nicole Poore and Rep. Krista Griffith, would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to the treatment and care of those suffering from one of the approximately 7,000 known rare diseases.

Passed overwhelmingly on Thursday, the bill creates a council that will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. 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. 

“It’s critical we do everything we can to make sure Delawareans suffering from a rare disease have access to the treatment they need and deserve,” said Lt. Governor Bethany Hall-Long, who led efforts to get the legislation introduced. “This advisory council will give patients, caregivers, and families a critical resource and more unified voice to removing barriers and improving access to quality care.” 

“Delaware families facing a rare disease experience incredible challenges, often starting with simply getting a correct diagnosis and ranging from finding specialists, therapies and medication to connecting with support groups who can provide them with the emotional encouragement that comes from people going through the same experience,” said Sen. Nicole Poore, vice chair of the Senate Health & Social Services Committee and prime Senate sponsor of Senate Bill 55. 

“Those families need a voice who can help to advocate for them, raise awareness about the unique issues they face and help our state to better meet their needs,” she said. “I want to thank Lt. Governor Bethany-Hall Long for her tireless support for creating the Delaware Rare Disease Advisory Council, and I want to thank my colleagues in the Senate for voting today to show some of Delaware’s most vulnerable residents that we have their back.” 

The National Organization for Rare Disorders (NORD) estimates that more than 90% of rare diseases do not have an FDA-approved treatment. The lack of treatment options combined with high out of pocket costs often lead to significantly diminished care for individuals with a rare disease.  

“Those who live with rare diseases face many hurdles, beginning with the great challenge of even finding a diagnosis for what are often debilitating, painful and life-threatening conditions. I’m hopeful that the work of this Advisory Council will give Delawareans greater access to specialists who can provide diagnoses and treatment; affordable access to therapies; and medication to treat rare diseases. I’m also excited for the opportunities this Advisory Council may present for research and development of new treatments for rare diseases,” said Rep. Krista Griffith. “I’m looking forward to passing this bill in the House.” 

Senate Bill 55 now heads to the House. 

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

Lt. Governor Bethany Hall-Long | News | Office of the Lieutenant Governor | Date Posted: Thursday, June 8, 2023


SB 55 passes the Delaware Senate.

DOVER, Del. – Lt. Governor Bethany Hall-Long applauds the Senate’s passage of Senate Bill 55, which creates a new advisory body for Delawareans suffering from rare diseases. 

Senate Bill 55, sponsored by Sen. Nicole Poore and Rep. Krista Griffith, would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to the treatment and care of those suffering from one of the approximately 7,000 known rare diseases.

Passed overwhelmingly on Thursday, the bill creates a council that will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. 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. 

“It’s critical we do everything we can to make sure Delawareans suffering from a rare disease have access to the treatment they need and deserve,” said Lt. Governor Bethany Hall-Long, who led efforts to get the legislation introduced. “This advisory council will give patients, caregivers, and families a critical resource and more unified voice to removing barriers and improving access to quality care.” 

“Delaware families facing a rare disease experience incredible challenges, often starting with simply getting a correct diagnosis and ranging from finding specialists, therapies and medication to connecting with support groups who can provide them with the emotional encouragement that comes from people going through the same experience,” said Sen. Nicole Poore, vice chair of the Senate Health & Social Services Committee and prime Senate sponsor of Senate Bill 55. 

“Those families need a voice who can help to advocate for them, raise awareness about the unique issues they face and help our state to better meet their needs,” she said. “I want to thank Lt. Governor Bethany-Hall Long for her tireless support for creating the Delaware Rare Disease Advisory Council, and I want to thank my colleagues in the Senate for voting today to show some of Delaware’s most vulnerable residents that we have their back.” 

The National Organization for Rare Disorders (NORD) estimates that more than 90% of rare diseases do not have an FDA-approved treatment. The lack of treatment options combined with high out of pocket costs often lead to significantly diminished care for individuals with a rare disease.  

“Those who live with rare diseases face many hurdles, beginning with the great challenge of even finding a diagnosis for what are often debilitating, painful and life-threatening conditions. I’m hopeful that the work of this Advisory Council will give Delawareans greater access to specialists who can provide diagnoses and treatment; affordable access to therapies; and medication to treat rare diseases. I’m also excited for the opportunities this Advisory Council may present for research and development of new treatments for rare diseases,” said Rep. Krista Griffith. “I’m looking forward to passing this bill in the House.” 

Senate Bill 55 now heads to the House. 

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.