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November 26, 2021

TOPIC: Patients & Members

NORD Gives Back: Caregivers and Families

Posted by Rohan Narayanan

As we reach the holiday season, let us take time to celebrate and lift up the rare disease community. For this season of giving thanks, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging plenaries to breakout sessions to speakers from… Read More

November 24, 2021

TOPIC: Patients & Members

NORD Gives Back: Advanced and Advancing Care

Posted by Rohan Narayanan

As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community.  For this season of giving, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging… Read More

November 24, 2021

TOPIC: NORDPod

One Father’s Barefoot 1,200 Mile Journey

Posted by Valaree DonFrancesco

Chris Brannigan, a major in the British Army, took off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an effort to raise funds for the creation of a gene therapy treatment that could help patients like his daughter Hasti, battling Cornelia de Lange Syndrome (CdLS ). The NORD community is so… Read More

November 22, 2021

TOPIC: Patients & Members

NORD Gives Back: Benefits for the Newly Diagnosed

Posted by Rohan Narayanan

As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community.  For this season of giving thanks, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum…. Read More

November 19, 2021

TOPIC: Press Releases, Advocacy

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

Posted 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