Written by Rohan Narayanan on April 8, 2022
90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway
April 8, 2022, Washington, DC – This week, the National Organization for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and… Read More
Written by Heidi Ross on February 18, 2021
The National Organization for Rare Disorders (NORD®) is pleased to support California Attorney General Xavier Becerra’s nomination as the next Secretary of the Department of Health and Human Services (HHS). Rare disease patients rely on close collaboration between HHS and numerous agencies under its purview, including the Food and… Read More
Written by Valaree DonFrancesco on September 29, 2020
SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION
By José Abdenur, MD and Rebekah Bressi, CGC
”Newborn screening is one of the most successful public health initiatives that allows physicians to prevent the disability or death of thousands of children every year. Providing a timely diagnosis… Read More
Written by Valaree DonFrancesco on September 10, 2020
Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases… Read More
Written by Valaree DonFrancesco on April 24, 2020
Between 25 and 30 million Americans have a rare disease, many of whom are disproportionately at risk of getting sick from COVID-19. According to the Centers for Disease Control and Prevention, in addition to older adults, people of any age who have serious underlying medical conditions… Read More