“This is a great day for the Connecticut rare disease community! The Connecticut RDAC coalition would like to thank Governor Lamont, Lt. Governor Susan Bysiewicz, the Connecticut General Assembly Public Health Committee, especially Committee Chair Representative Jonathan Steinberg and Ranking Member William Petit for all their support and hard work on this legislation,” said Lesley Bennett, National Organization for Rare Disorders (NORD) Connecticut Rare Action Network Volunteer Ambassador. “This RDAC will give patients, families, caregivers, health care providers, advocates, researchers, and other stakeholders an opportunity to make formal recommendations to state agencies and our legislature on ways to develop public policy and health care legislation that will improve the lives of those impacted by a rare disease in Connecticut.”

NORD established Project RDAC in 2020 to increase the number of RDACs across the country and help optimize existing RDACs. Including Connecticut, a total of 23 states have signed legislation into law creating a Rare Disease Advisory Council, with RDAC legislation being signed into law in nine states since the start of 2021 alone.

“Sincerest appreciation to the coalition of lawmakers, patients, caregivers, and other members of the rare disease community who worked together to establish a permanent Rare Disease Advisory Council here in Connecticut,” said Peter Saltonstall, NORD President and CEO. “NORD has its roots in this state – through our founder, Abbey Meyers, and our founding nearly four decades ago. It’s incredibly empowering that Connecticut will have a permanent RDAC to help give its residents a stronger voice in their government and provide further partnership opportunities.”

Any condition that affects fewer than 200,000 Americans is considered rare. There are more than 7,000 known rare diseases, affecting 25-30 million Americans across a broad spectrum of medical conditions.  People living with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a health care provider with expertise in their condition, and a lack of affordable access to therapies and medications used to treat rare diseases.

For more information on NORD’s Project RDAC, visit rarediseases.org/projectrdac. To learn more about NORD’s policy work, visit: bit.ly/Policy-Issues.

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About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.

The post Connecticut Establishes a Permanent Rare Disease Advisory Council appeared first on NORD (National Organization for Rare Disorders).

May 9, 2022, Augusta, ME – Today, Maine’s rare disease community celebrated the passage of Legislative Document 972 (LD 972), which officially establishes a Rare Disease Advisory Council (RDAC) in Maine. The RDAC will advise the Maine Legislature and other state departments and agencies on issues that impact the rare disease community.  

There are more than 7,000 known rare diseases affecting approximately 25-30 million Americans, more than half of which are children. People with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a health care provider with expertise in their condition, and a lack of affordable access to therapies and medications used to treat rare diseases. 

Maine’s RDAC will be made up of 20 members with strong connections to the rare disease community, including patients, caregivers, and health care professionals The Maine RDAC will be tasked with identifying and distributing educational resources for health care providers on rare diseases, increasing public awareness of rare diseases in the state, and establishing a comprehensive plan for the management of rare diseases in the state. The council will submit an annual report to the Governor, the Commissioner of Health and Human Services and the Legislature, which  must be posted on a publicly accessible website. 

“Today, Maine has taken an important step towards improving the outcomes for rare disease patients and families across our state. This legislation was passed in partnership – between the governor, lawmakers on both sides, and several committed advocates – and in turn, it will establish an advisory council committed to that spirit of partnership by helping to establish a brighter future for children and adults with rare diseases,” said Representative Margaret Craven, the sponsor of the Rare Disease Advisory Council legislation.  

“Thank you to Rep. Margaret Craven for championing this legislation to help make a difference for the 1-in-10 Mainers currently living with a rare disease,” said Heidi Ross, Vice President, Policy and Regulatory Affairs, National Organization for Rare Disorders. “Bringing important stakeholders together and building a culture of learning – both possible through an RDAC – will help to give Maine’s rare disease community a stronger voice in state government.”  

The National Organization for Rare Disorders (NORD®) established Project RDAC in 2020 to increase the number of RDACs across the country and help optimize existing RDACs. Including Maine, a total of 23 states have signed legislation into law creating a Rare Disease Advisory Council, including six in 2021 alone. 

For more information on NORD’s Project RDAC, visit https://rarediseases.org/projectrdac/. To learn more about NORD’s policy work, visit: http://bit.ly/Policy-Issues. 

About the National Organization for Rare Disorders (NORD) 

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org. 

The post Maine Elevates Rare Disease Voices, Establishes State Advisory Council appeared first on NORD (National Organization for Rare Disorders).

May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp signed legislation into law to establish a Rare Disease Advisory Council (RDAC) in Georgia. This advisory body will be comprised of a variety of stakeholders including patients, caregivers, health care providers, researchers, and patient advocacy organizations and will advise the Georgia General Assembly and other state agencies and departments on the needs of individuals with rare diseases living in Georgia. The RDAC will be tasked with activities such as conducting surveys to better understand common challenges rare disease patients or caregivers face, consulting with experts to improve access to quality health care, and compiling resources related to rare diseases.

There are more than 7,000 known rare diseases affecting approximately 25-30 million Americans, more than half of which are children. People with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a health care provider with expertise in their condition, and a lack of affordable access to therapies and medications used to treat rare diseases.

“Tuesday marked an incredible milestone for the rare community in Georgia. I would like to extend my heartfelt thanks to Governor Kemp who signed the Rare Disease Advisory Council legislation into law. It is truly an honor to serve and advocate on behalf of children and adults with rare and complex diseases,” said Beth Nguyen, RN, the National Organization for Rare Disorders (NORD) Georgia Rare Action Network Volunteer State Ambassador.

“This newly established RDAC will provide a platform for the rare community to have a stronger voice in the state of Georgia. These advocate-built councils are a great display of community engagement and partnership between families and the government. NORD would like to express our appreciation to Representative Mike Cheokas for being a champion for Georgia’s rare disease community by sponsoring this important legislation and ensuring it got over the finish line,” said Heidi Ross, Vice President, Policy and Regulatory Affairs, NORD.

NORD launched a new initiative, Project RDAC, in 2020 with the goal of increasing the number of RDACs across the country and helping to optimize existing RDACs. A total of 21 states have signed legislation into law creating a Rare Disease Advisory Council, including six in 2021 alone.

For more information on NORD’s Project RDAC, visit https://rarediseases.org/projectrdac/. To learn more about NORD’s policy work, visit: http://bit.ly/Policy-Issues.

About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.

The post Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council appeared first on NORD (National Organization for Rare Disorders).

Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Americans living with a rare disease, is celebrating the growth and success of rare disease advisory councils throughout the country.

A Rare Disease Advisory Council (RDAC) provides a platform to strengthen the voice of the rare disease community in state government. Through Project RDAC, an initiative officially launched in late 2020, NORD is working to optimize existing RDACs and increase the number of states with Councils to ensure the needs of the rare disease community are being met.

“The first year of Project RDAC directly led to the creation of seven new RDACs across the country, which is an impressive reflection of the strength of the rare disease community and the interest and engagement of volunteers, state decisionmakers, patients and families. NORD is so proud of the new RDACs established, and greatly looks forward to doing more policy engagement and coalition building next year,” said Peter Saltonstall, CEO and President, NORD.

Project RDAC’s state action and impact to date includes:

• 57 RDAC coalition meetings
• 201 patient organizations engaged
• 254 legislators contacted with action alerts
• 114 testimonies and letters of support submitted
• 11 RDAC bills introduced
• 7 new RDACs signed into law in 2021

The seven states to pass RDACs in 2021 are Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina, and Virginia.

For more information on RDACs, NORD’s work with state governments throughout the country, and ways to get involved, visit the Project RDAC website.

About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.

The post Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils appeared first on NORD (National Organization for Rare Disorders).

National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN) published 

“The State Report Card provides insight into the advances being made at the state level in supporting Americans living with rare diseases, and identifies where we still need to focus attention,” said NORD President and CEO, Peter L. Saltonstall. “For almost 40 years, NORD has served as the voice of the rare disease community, and we are committed to fighting for rare disease patients and policy changes that will make a difference in their lives. Our hope is that patients, advocates and policymakers find the new State Report Card site a useful tool in their work on policies to best meet the needs of rare patients and families.” 

The 6th Edition of the State Report Card, compiled using data current as of November 2020, is presented in a new digital format, providing improved accessibility to the information contained in previous editions, as well as additional resources. The report provides detailed analysis across eight major policies, grading each state on its performance in those areas. Takeaways from the new report include: 

• Newborn screening: Many states increased the number of heritable conditions for which they screen in 2020. Across the country, more families were able to receive a diagnosis for their child as early as possible and grant other families peace of mind about their child’s health. NORD advocates for robust, well-funded newborn screening programs in every state. 

•  Rare Disease Advisory Councils (RDACs): Massachusetts, New York, Ohio, Tennessee, Utah and West Virginia successfully enacted Rare Disease Advisory Council legislation to elevate the rare disease community’s voice in state government, bringing the total number of RDACs to 16. NORD launched Project RDAC in November 2020 with a goal of optimizing the existing 16 RDACs and helping more states to enact RDAC legislation. 

•  Medicaid: In 2020, Oklahoma and Missouri moved to expand eligibility for their state Medicaid programs, joining 39 states (including Washington DC) that have opted to extend access to this vital safety net. However, several states also pursued harmful policies that could inhibit the ability of rare disease patients to access care, such as the elimination of retroactive eligibility or limits to prescription drug coverage. NORD supports the ability of eligible rare disease patients to receive Medicaid services without unnecessary and harmful barriers.   

•  Step Therapy: Louisiana, North Carolina and South Dakota passed new patient protections for step therapy protocols in 2020, adding to the growing list of 31 states with comprehensive step therapy protections. NORD supports policies to reform step therapy and protect patients by requiring that protocols are based on clinical criteria, clear exceptions processes exist, and certain automatic exceptions are outlined and respected.  

•  Out-of-Pockets Costs: Two states took action in 2020 to help protect patients from rising out-of-pocket costs. New Jersey successfully capped out-of-pocket costs for patients at $150 per month per drug and Georgia banned copay accumulator programs. Still, more than half of states received a failing grade in this crucial policy area. NORD recognizes the direct impact high drug costs have on patients and advocates for policies to lower patient out-of-pocket expenses and maximize access to needed therapies. 

For more information and to view the state-by-state report cards, maps, patient stories, resources and to download a full copy of the State Report Card, visit: http://bit.ly/State-Report-Cards. To learn more about NORD’s policy work, visit: http://bit.ly/Policy-Issues. 

The post NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients appeared first on NORD (National Organization for Rare Disorders).