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January 27, 2021

TOPIC: Press Releases, Featured News, Advocacy, State Report Card, Medicaid

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Posted at January 1, 2021 09:25 am by Valaree DonFrancesco

Washington, DC, January 27, 2021Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million AmericanRead More

December 22, 2020

TOPIC: Featured News, Patients & Members, Advocacy, RareInsights

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

Posted at December 12, 2020 03:33 pm by Rose Gallagher

After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect patients from surprise medical billing. This is a major win for rare disease patients and their families that will help protect them from unexpected medical bills. The provisions to end surprise medical… Read More

December 17, 2020

TOPIC: Featured News, Patients & Members, Advocacy, #NORDintheNews

STAT Features NORD in Article on the Continued Threat PPE Shortages Pose to Some Rare Disease Patients

Posted at December 12, 2020 01:09 pm by Valaree DonFrancesco

In a 12.16.2020 article from STAT on how shortages of protective gear pose a continued threat to some rare disease patients, NORD’s COVID-19 Community Survey Report is highlighted and NE Rare Action Network’s Aimee Guarnieri and NY Rare Action Network’s Mary Wooten are interviewed. Also interviewed in the piece is Lauren Ruotolo, president of the Read More

December 16, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP

Posted at December 12, 2020 08:31 am by Valaree DonFrancesco

The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers for rare diseases. It will increase the efficiency of data analysis, and hopefully expedite treatments for rare diseases individually and for Read More

December 9, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

Patient Advocacy Group Leaders Tell How Data Sharing Can Help with Understanding Rare Diseases in New Video

Posted at December 12, 2020 08:44 am by Valaree DonFrancesco

Natural history studies provide health care professionals and researchers with first-hand information about people living with rare diseases and give insight into how rare diseases present, progress over time and impact patients. Data sharing supports patients by helping the community understand their disease better, which helps improve clinical care and can accelerate the development of… Read More