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April 22, 2022

TOPIC: Featured News

The Running for Rare Team Crossed Another Finish Line

Posted at April 4, 2022 11:03 am by Valaree DonFrancesco

On Monday, April 18, seven members of NORD’s Running for Rare team stretched their legs and put their sneakers to the pavement to take on the Boston Marathon! During the race, NORD staff members Jaime Pacheco, Ed Neilan, Julie Manus, Amanda Thomas and 36 individuals were present and could be heard loudly from the cheer section.

In addition to running,… 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 30, 2021

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

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Posted at September 9, 2021 08:00 am by Maia Craig

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan and MRI came back as inconclusive, she recommended for… Read More

September 28, 2021

TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer

Head of the Herd: David Arons, National Brain Tumor Society

Posted at September 9, 2021 08:00 am by Maia Craig

David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare disease space.

1. How did you get started in the rare disease community?

I was motivated by my father who died of advanced metastatic melanoma when I was… Read More

September 1, 2021

TOPIC: Featured News, Newborn Screening

Newborn Screening: History, Future and Awareness Month

Posted at September 9, 2021 02:15 pm by Valaree DonFrancesco

Every September, we celebrate and raise awareness for newborn screening (NBS) in the United States and the impact it has had on millions of families. Each year, approximately four million babies are screened for serious disorders that are present at birth. Of those four million, screening identifies over 12,000 infants annually with a condition that, if left undiagnosed and untreated, would cause… Read More