“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).

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).

That is why I am urging you to attend NORD’s 2017 Rare Diseases and Orphan Products Breakthrough Summit this October 16-17 in Washington, D.C.
Why attend?
Creating a culture of conversation, education, and engagement around the debate in our nation’s healthcare system, the NORD Rare Summit is the place for YOU to interact with leaders from the FDA, NIH, patient advocacy groups, medical professionals, the orphan product industry and your colleagues. At NORD, we value your personal and professional insights and participation to help establish an inclusive environment of meaningful inspiration and collaboration.
The keynotes
As you may have read, this year’s event will feature parent advocate, award-winning journalist, and founder/CEO of The Mighty, Mike Porath; and the new Commissioner of the Food and Drug Administration, Dr. Scott Gottlieb. The keynotes are a pinnacle example of the viewpoints and topics that will be discussed at the summit this year.
What else can you expect?
NORD, our members, our sponsors and you continue to play an integral role in advocating for the rare disease patient community. In support of our mutual commitment, we are proud to present:

• Over 20 roundtable topics each day
• Six breakout tracks
• 96 speakers discussing topics from guidelines to next-generation treatments to advancing global collaboration
• Poster sessions highlighting groundbreaking innovation and emerging research
• Countless networking opportunities available through our networking app, Converve

I urge you to be part of the conversation and debates as we work together to drive improvement and progress. As an incentive, we are pleased to offer advanced pricing until August 25. View the agenda and start planning today!
I look forward to greeting you in person.
Peter L. Saltonstall
President and CEO
National Organization for Rare Disorders (NORD)

NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest multi-stakeholder event in rare diseases.
The NORD Rare Summit takes place in Washington, D.C. October 16 -17. 

We hope you can join us! Learn more and register today.

The post Advance the Dialogue at the NORD Rare Summit appeared first on NORD (National Organization for Rare Disorders).

We are making progress throughout the country for the 1 in 10 Americans with rare diseases.

Here is a list of legislative initiatives that NORD and our network of advocates are actively participating in to better the lives of people and families in the rare disease community.

Don’t see your state on the list? Contact NORD to get the issues that you are facing added to this list. The RareAction Network℠ increases the awareness of those issues to key decision-makers and elected officials in the states or regions that can take action to make essential change.

If you’re interested in getting involved in your state, contact Tim Boyd at tim.boyd@rareaction.org

Follow the conversation on Twitter using #RareAction

The post RareAction Network℠ Releases April State Legislative Tracker appeared first on NORD (National Organization for Rare Disorders).