“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).

Washington, DC, March 3, 2022— Today, the National Organization for Rare Disorders (NORD), the leading rare disease advocacy organization, released a dynamic new resource to educate healthcare nonprofit and advocacy leaders on how a lack of diversity, equity, and inclusion (DEI) is affecting marginalized groups in the rare disease community. This expansive resource – the first in a series of three toolkits – offers tools and strategies for implementing DEI within rare disease nonprofit organizations to help address current barriers and expand the communities being served.  

“NORD has long advocated for adequate, accessible, equitable and affordable healthcare coverage, especially considering the rare disease community includes a number of marginalized patient communities. Social determinants of health – including income, education, and even one’s own zip code – create significant barriers that lead to delays in diagnosis, difficulty accessing treatments, and increased mortality rates,” said Peter Saltonstall, President and CEO of NORD. “NORD’s vision is to help build a more equitable future in which all of the more than 25 million Americans living with a rare disease have access to the care they need to survive and thrive.”

NORD brings together rare disease patients, caregivers, leaders, researchers, clinicians, regulators, advocates, and industry to better understand and fight for diversity, equity and inclusion within the rare disease community.  

The “Part One: Navigating DEI in Rare Disease Nonprofits,” toolkit is based on NORD’s 2021 DEI Webinar Series for Rare Disease Nonprofits, a three-part series focused on the foundation of diversity, equity, and inclusion, their applicability to the rare disease community, and how rare disease nonprofits can increase engagement with marginalized communities.  

View or download the full toolkit. 

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 Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits appeared first on NORD (National Organization for Rare Disorders).

This #NORDGivesBack content dives into different ways to become a rare advocate. If you want to become a rare advocate or ally this year, start with Rare Disease Day! This celebration falls on the rarest day of the year, Monday, February 28. Visit NORD’s Rare Disease Day website for ways to get involved! 

Fighting Back & Fighting Forward Through Advocacy 

This Living Rare Forum session explores how to get involved in rare advocacy and provide tips on how to become the best advocate you can be for the over 25 million Americans affected by rare diseases. 

The ABCs of Advocating for Your Child’s Education 

This important session from the Living Rare Forum summarized the rights and protections available to children in schools and helped parents develop the skills to effectively advocate for their school-aged children. 

Connect with others and pass on these resources to allies and advocates you know within the rare disease community. #NORDGivesBack 

Access the full playlist on YouTube today. Subscribe to NORD’s channel to be alerted to new videos as soon as they are released. 

The post NORD Gives Back: Advocacy and Action appeared first on NORD (National Organization for Rare Disorders).

This #NORDGivesBack content dives into the experiences of living/having a sibling with a rare disease. Explore this interesting and important perspective to spark conversation and provide a safe space for the siblings of patients with rare diseases.  

 The Rare Sibling Experience 

Discover the unique challenges and opportunities of growing up the sibling of a rare disease patient. This engaging and affecting resource showcased panelists sharing about the joys and obstacles they’ve encountered on their journeys and how love for their sibling has led them to advocacy.  

 Connect with others and pass on these resources to allies and advocates you know within the rare disease community. #NORDGivesBack 

Access the full playlist on YouTube today. Subscribe to NORD’s channel to be alerted to new videos as soon as they are released. 

The post NORD Gives Back: Rare Disease & Family Life appeared first on NORD (National Organization for Rare Disorders).