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).

February 22, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) published the latest edition of its annual State Report Card, which rates all 50 states and Washington, DC on the most important issues affecting the more than 25 million Americans living with a rare disease. The State Report Card was compiled using data through November 2021 and provides detailed analysis in grading each state on its performance on nine major policies of importance to the rare disease community such as newborn screening, Medicaid eligibility and prescription drug out-of-pocket cost protections.

“NORD was founded in 1983 by individuals fighting for policy change against all odds. We’re proud to continue to identify ways the rare disease community can push their lawmakers to better support rare disease patients through the latest edition of our State Report Card,” said Heidi Ross, Acting Vice President, Policy and Regulatory Affairs, NORD. “When NORD launched the State Report Card project in 2015, our goal was to create an easy-to-use resource to evaluate how effectively states were serving individuals and families living with rare diseases, provide insight into the advances being made across the country, and identify where we still need to work together and focus our attention.”

Key takeaways from the new report include:

• Only six states received an A grade on protecting patients from increasingly high prescription drug out-of-pocket costs.
• Despite the critical importance of telehealth during the COVID-19 pandemic, 18 states received a failing grade when it comes to removing barriers for patient access to out of state providers via telehealth.
• Short term, limited duration insurance continues to be unregulated in many states, as only 11 states received an A grade for their oversight and regulation of these plans, which fail to offer the comprehensive health care coverage vital to rare disease patients.
• A total of 21 states have signed legislation into law creating a Rare Disease Advisory Council, including six in 2021 alone. These councils give rare disease patients a unified voice in state government and act as an advisory body to government leaders.

For more information and to view or download the full state-by-state report cards, including maps, patient stories, and resources, visit: http://bit.ly/State-Report-Cards. 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 A Rare Report Card: NORD Grades All 50 States on Rare Disease Policy Issues 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).

First established by North Carolina rare disease patients, families and health care providers in 2015, an RDAC provides stakeholders with a forum to make recommendations to state leaders on matters of importance to the rare disease community, including the need for increased awareness, access to diagnostic tools, and affordable treatments and cures. Through strong RDACs, the rare disease community and government officials can partner to develop the resources necessary to strategically address barriers, allowing states and their citizens to thrive.  

“RDACs have outstanding potential for addressing obstacles that prevent individuals living with rare diseases from obtaining proper treatment and care for their conditions,” said Rachel Sher, Vice President, Policy and Regulatory Affairs for NORD. “Since 2019, eight governors have signed RDAC legislation into law, bringing the total number of RDACs established by states to 14, and momentum is continuing to grow,” Sher said.  

Project RDAC will offer opportunities for existing RDAC members to connect and collaborate on a regular basis, provide educational resources to guide RDACs at every step of their journey, and help additional states pass legislation to create high-functioning RDACs.   

On December 16, NORD will virtually convene a meeting of the rare disease community, members of existing RDACs, and advocates from states actively pursuing legislation to enact an RDAC. This event will feature an “Early Successes and Challenges of RDACs” panel, breakout sessions for networking, and information that can guide future efforts to introduce and enact RDAC legislation into law across the country. To register for the meeting, click here. 

For more information on Project RDAC and how to get involved with a Rare Disease Advisory Council in your state, visit the https://rarediseases.org/rdac-overview/ or email policy@rarediseases.org. 

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