Since NORD launched Project RDAC in 2020,
Mississippi becomes the 28th state
to establish an RDAC to better focus public policy efforts for
people living with rare diseases
JACKSON,
Miss., April 16, 2024 /PRNewswire/ -- Today,
patients and families in Mississippi's rare disease community
celebrated Governor Tate Reeves'
signing of SB 2156, which officially establishes a Rare Disease
Advisory Council (RDAC) in the state of Mississippi.
"An estimated 1 in 10 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 is thrilled to see Mississippi 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 bill
champions Representative Jay
McKnight and Senator Kevin
Blackwell for their efforts to create an RDAC in
Mississippi."
The RDAC will comprise of a diverse group of rare disease
stakeholders including patients, caregivers, healthcare providers,
researchers, and members of pharmaceutical and health insurance
companies. Their expertise will be an asset to the entire state,
creating a platform to educate the public, state agencies,
healthcare providers, and the Legislature about the complex medical
needs of those with rare diseases and to make policy
recommendations that improve rare disease patient access to
critical health care services. In year one, the RDAC will develop a
landscape study on the unmet needs in Mississippi and collect research topic areas
from the public to help inform the prioritization of issues
impacting Mississippi's rare
disease community.
"I was proud to sign Senate Bill 2156 into law," said
Mississippi Governor
Tate Reeves. "Our state remains
committed to supporting those living with a rare disease, and The
Mississippi Rare Disease Advisory Council will help to accomplish
exactly that. It's another great tool in our state's toolbox, and I
look forward to seeing its positive impact on
Mississippians."
"It has been my pleasure to lead the Mississippi Rare Disease
Advisory Council bill for the last several years in the
House. I have received an innumerable number of calls and
messages from my own constituents and individuals all over the
state on this issue and they all have the same ask; give
Mississippi's rare community a
voice. Today, we are doing that by finally seeing the RDAC bill go
into law," stated Representative McKnight.
Senator Blackwell added, "I'm proud to see Mississippi's Rare Disease Advisory Council
become law. I take the responsibility of leading efforts for health
care reform in the Senate seriously, and I promised to address the
health, financial, economic and educational challenges in a
commonsense way. With over 30 years of experience in the healthcare
industry, I know how unique the rare disease patient and caregiver
experience is and convening a body of experts on these complex
issues to develop solutions together is just good business."
Aaron Blocker, a patient
living with a rare disease in Mississippi said, "The establishment of the
Rare Disease Advisory Council in Mississippi stands as a monumental victory for
patients like myself across our state. This pivotal legislation
signals a profound commitment to addressing the unique needs and
challenges faced by those of us battling rare diseases, offering
hope and support to individuals and families."
"We are seeing encouraging moves in the Mississippi legislature to improve access to
care and medical treatment for Mississippians living with rare
disease, including an opportunity right now to expand Medicaid,"
said Carolyn Sheridan, State
Policy Manager at NORD. "We look forward to working with our
Rare Action Network advocates and volunteers to continue to
highlight and advance critical priorities and build on our
momentum."
With the formation of the Mississippi RDAC, the state will be
well-positioned to tackle issues most critical to people living
with rare disease, including improving policies that can jeopardize
health care coverage, access, and affordability for rare disease
patients, including time to diagnosis through newborn screening,
limitations on Medicaid enrollment, inadequate state-regulated
insurance, and failure to protect against high out-of-pocket
prescription drug costs.
About the National Organization for Rare Disorders
(NORD)
With a more than 40-year history of advancing care, treatments and
policy, the National Organization for Rare Disorders (NORD) is the
leading and longest-standing patient advocacy group for the more
than 30 million Americans living with a rare disease. An
independent 501(c)(3) nonprofit, NORD is dedicated to individuals
with rare diseases and the organizations that serve them. NORD,
along with its more than 340 patient organization members, is
committed to improving the health and well-being of people with
rare diseases by driving advances in care, research and policy. For
more information, visit rarediseases.org.
NORD established Project RDAC in 2020 to increase the number of
Rare Disease Advisory Councils across the country and help optimize
existing councils. For more information on Project RDAC,
visit rarediseases.org/rare-disease-advisory-councils. To learn
more about NORD's policy work,
visit rarediseases.org/driving-policy/.
NORD encourages any individuals looking to get involved in rare
disease advocacy to join the NORD Rare Action Network today.
Rare disease facts can be found here:
https://rarediseases.org/wp-content/uploads/2024/04/Rare-Disease-Fact-Sheet.pdf.
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SOURCE National Organization for Rare Disorders (NORD)