“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 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).

The interview can be read in its entirety here.

The post NORD’s Pamela Gavin Interviewed on Health Equity by PharmaBoardroom for Rare Disease Day appeared first on NORD (National Organization for Rare Disorders).