Delaware News

Delaware Rare Disease Advisory Council Hosts First Meeting

Former Lt. Governor Bethany Hall-Long (2017-2025) | Newsroom | Office of the Lieutenant Governor | Date Posted: Thursday, June 27, 2024


Rare Disease Advisory Council Meets
DOVER, Del. — The Delaware Rare Disease Advisory Council held its inaugural meeting on Tuesday, taking its first steps to address innovation and research, patient care, and affordable and accessible treatment therapies.  
 
Delaware is one of 27 states with a Rare Disease Advisory Council. Established by Senate Bill 55, sponsored by Sen. Nicole Poore and Rep. Krista Griffith, the First State’s Rare Disease Advisory Council (RDAC) is an advisory body made up of community advocates, healthcare professionals, scientists, and state leaders.  
 
Per the law, the council is housed within the Lieutenant Governor’s Office. The goals of the body include developing policy recommendations, advocating for research funding, and educating many audiences – from doctors to legislators – about rare diseases as a public health issue.  
 
“Here in Delaware, we pride ourselves on listening to our constituents and taking action. That’s exactly what we did with the state’s Rare Disease Advisory Council. I want to thank Sen. Poore and Rep. Griffith for sponsoring the legislation that led to this critical advisory body. It’s been a long time in the making,” said Lt. Governor Bethany Hall-Long, PhD, RN.   
 
“One in 10 Americans are living with a rare disease. Too often, it can feel like you’re alone, without the necessary support to navigate difficult times. This council aims to break the stigma, providing a forum to raise awareness, generate support, and advocate for innovative care and treatments. We have to think big and put all the right stakeholders in the room in order to move the needle for rare disease care. I look forward to the progress we will make for our friends, family members, and neighbors.” 
Nationally, it is estimated that 25-30 million Americans suffer from a rare disease, but more than 90% of rare diseases do not have an FDA-approved treatment, according to the National Organization for Rare Disorders (NORD). That’s one of the reasons why Delaware’s RDAC will play a critical role for constituents.  
 
On Tuesday, the council elected Sen. Nicole Poore as chair of the group.  
 
“It is a great privilege to chair Delaware’s first Rare Disease Advisory Council. Families facing a rare disease experience incredible challenges, from obtaining a correct diagnosis to finding specialists, therapies, and medication. With this council, we are providing an opportunity to uplift these issues, find solutions, and amplify the voices of those impacted,” said Sen. Poore. “I am looking forward to working with my fellow council members and advocates on meaningful recommendations to support our residents living with a rare disease.” 
 
The council also set out goals for its upcoming meetings, including adopting bylaws and discussing how to best compile and share information about rare disease resources with the public. 
 
For more information on the Delaware Rare Disease Advisory Council, please visit this website. 
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.

Delaware Rare Disease Advisory Council Hosts First Meeting

Former Lt. Governor Bethany Hall-Long (2017-2025) | Newsroom | Office of the Lieutenant Governor | Date Posted: Thursday, June 27, 2024


Rare Disease Advisory Council Meets
DOVER, Del. — The Delaware Rare Disease Advisory Council held its inaugural meeting on Tuesday, taking its first steps to address innovation and research, patient care, and affordable and accessible treatment therapies.  
 
Delaware is one of 27 states with a Rare Disease Advisory Council. Established by Senate Bill 55, sponsored by Sen. Nicole Poore and Rep. Krista Griffith, the First State’s Rare Disease Advisory Council (RDAC) is an advisory body made up of community advocates, healthcare professionals, scientists, and state leaders.  
 
Per the law, the council is housed within the Lieutenant Governor’s Office. The goals of the body include developing policy recommendations, advocating for research funding, and educating many audiences – from doctors to legislators – about rare diseases as a public health issue.  
 
“Here in Delaware, we pride ourselves on listening to our constituents and taking action. That’s exactly what we did with the state’s Rare Disease Advisory Council. I want to thank Sen. Poore and Rep. Griffith for sponsoring the legislation that led to this critical advisory body. It’s been a long time in the making,” said Lt. Governor Bethany Hall-Long, PhD, RN.   
 
“One in 10 Americans are living with a rare disease. Too often, it can feel like you’re alone, without the necessary support to navigate difficult times. This council aims to break the stigma, providing a forum to raise awareness, generate support, and advocate for innovative care and treatments. We have to think big and put all the right stakeholders in the room in order to move the needle for rare disease care. I look forward to the progress we will make for our friends, family members, and neighbors.” 
Nationally, it is estimated that 25-30 million Americans suffer from a rare disease, but more than 90% of rare diseases do not have an FDA-approved treatment, according to the National Organization for Rare Disorders (NORD). That’s one of the reasons why Delaware’s RDAC will play a critical role for constituents.  
 
On Tuesday, the council elected Sen. Nicole Poore as chair of the group.  
 
“It is a great privilege to chair Delaware’s first Rare Disease Advisory Council. Families facing a rare disease experience incredible challenges, from obtaining a correct diagnosis to finding specialists, therapies, and medication. With this council, we are providing an opportunity to uplift these issues, find solutions, and amplify the voices of those impacted,” said Sen. Poore. “I am looking forward to working with my fellow council members and advocates on meaningful recommendations to support our residents living with a rare disease.” 
 
The council also set out goals for its upcoming meetings, including adopting bylaws and discussing how to best compile and share information about rare disease resources with the public. 
 
For more information on the Delaware Rare Disease Advisory Council, please visit this website. 
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.