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November 19, 2021

TOPIC: Press Releases, Advocacy

NORD’s Response to the House Passage of the Build Back Better Act

Posted at November 11, 2021 09:48 am by Rohan Narayanan

Washington, DC, November 19, 2021— Today, the House of Representatives passed H.R. 5376, the Build Back Better Act. In response, the National Organization for Rare Disorders (NORD), which represents the 25-30 million Americans living with a rare disease, released the following statement:

“Although NORD is encouraged by many provisions that will help improve access to and affordability of critical health programs… Read More

November 18, 2021

TOPIC: Advocacy, Get Involved

With the Build Back Better Act, Congress Threatens Progress for Americans with Rare Diseases

Posted at November 11, 2021 08:15 am by Rohan Narayanan

As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at one of the most vulnerable populations in our nation: the rare disease community. The Build Back Better Act, H.R. 5673, currently includes a harmful provision that threaten the… Read More

November 1, 2021

TOPIC: Press Releases, Advocacy

Protecting Patients and Telehealth Access: Over 230 National Organizations Urge Governors Across the Country to Maintain and Expand Licensure Flexibilities Throughout Federal Public Health Emergency

Posted at November 11, 2021 07:30 am by Rohan Narayanan

Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care

Washington, DC – November 1, 2021 – Today, more than 230 organizations sent a letter to all 50 state governors urging them to maintain and expand licensure flexibilities enacted at the start of the pandemic for the duration of the… Read More

October 29, 2021

TOPIC: Press Releases, Featured News, Advocacy

NORD Response to New Draft of the Build Back Better Act

Posted at October 10, 2021 01:07 pm by Rohan Narayanan

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft of the Build Back Better Act (H.R. 5376):

Peter Saltonstall, CEO and President of NORD, stated: “As negotiations continue on the Build Back Better Act, NORD urges Congress to remove this harmful provision which would gut a key incentive from the 1983 Orphan… Read More

September 17, 2021

TOPIC: Patients & Members, Advocacy, Patient Stories, Voices of Rare Cancer

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were ineffective in reducing her pain. Early detection is needed in diagnosing chondrosarcoma, and we found a lack of information available about the disease. 

Other false assumptions and misinformation were communicated… Read More