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November 24, 2020

TOPIC: Featured News, Medical, Patients & Members

NORD and Partners Publish Abstract Based on Web-Based Hemophilia A Educational Initiative for Patients, Caregivers and HCPs

Posted by Katie Kowalski

The National Organization for Rare Disorders (NORD®), in partnership with PlatformQ Health, the Hemophilia Federation of America and the National Hemophilia Foundation, is pleased to announce the publication of an outcomes-evaluation abstract in conjunction with the 62nd American Society of Hematology (ASH) Annual Meeting. Assessing Patient and Provider Perspectives, Clinical Practice, Behaviors, and Knowledge on Hemophilia A Care is… Read More

November 20, 2020

TOPIC: Featured News, #NORDintheNews

Connecticut Magazine Features NORD in Article on CT Nonprofits

Posted by Laura Mullen

On 11.19.20 in an article entitled “Ways to Make Your Donated Money and Goods Go Further,” Connecticut magazine included NORD in their list of ten Connecticut-based nonprofits that have each earned four stars from charity-assessment monitor Charity Navigator.



November 19, 2020

TOPIC: Press Releases, Featured News, Research

NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades

Posted by Laura Mullen

Washington, DC—November 19, 2020: Today, the National Organization for Rare Disorders (NORD®) published comprehensive report through its RareInsights™ initiative: Barriers to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative AnalysisAs part of an ongoing mission to generate evidence and data to advanceRead More

November 18, 2020

TOPIC: Press Releases, Featured News, Advocacy, RDACs

NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

Posted by Laura Mullen

Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in building well-organized, high-functioning Rare Disease Advisory Councils (RDACs)… Read More

November 13, 2020

TOPIC: Featured News, Medical, Advocacy, #NORDintheNews

Telehealth Report from NORD Covered in Managed Healthcare Executive

Posted by Laura Mullen

NORD’s recent telehealth report was featured in an article in Managed Healthcare Executive, a digital magazine from MJH Life Sciences, on 11.12.2020:

“The federal government took important steps to temporarily expand coverage for telehealth services during the pandemic, including removing barriers for Medicare patients. Plus, most states are allowing out-of-state healthcare providers in good standing to practice telehealth across state… Read More