Before members of Congress pack up and go home for the holidays in December, there’s one important thing they need to do: Complete the reauthorization of the Newborn Screening Saves Lives Act.
At the start of this Congressional year, reauthorization of this very successful legislation appeared to be a slam-dunk. The value of the Newborn Screening Saves Lives Act has been well documented.
Both the House and Senate passed reauthorization bills with little fanfare. But now the legislation has become stalled in the Senate, and it is not at all certain that the impasse will be resolved before the end of this Congressional season.
To leave this critically important matter in limbo would be a disservice to all Americans … and, in particular, to the rare disease community.
The Monaco family’s story illustrates why newborn screening is important. In 2001, son Stephen went to bed one evening a lively and precocious toddler. By morning, he was in medical crisis, his life forever compromised by a “silent” disease that no one knew he had.
Stephen’s sister, Caroline, leads a normal, active life today as a result of newborn screening that made possible proactive measures to protect her.In addition to the tragic loss of Stephen’s ability to fulfill his early promise, this story also has an economic component. Stephen will need a lifetime of sophisticated medical care, whereas a major part of Caroline’s treatment is simply a modified diet.
On behalf of all the Stephens and Carolines in this world, NORD is inviting everyone to join us in letting Congress know that newborn screening is important to us. We have sent a letter to Congress signed by more than 70 organizations and rare disease medical experts.
In addition, our policy team has drafted an email that you can easily personalize and send to your Congressional representatives today. Please consider joining us in this important effort.
NORD and Frontline Medical Communications have signed a strategic partnership agreement to collaborate and develop innovative educational programs for physicians and other healthcare providers (HCPs). read more >
NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing hosted by the House Energy & Commerce Committee Subcommittee on Health as part of the 21st Century Cures initiative. read more >
In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had been living with this disease for at least six years prior to diagnosis. read more >
On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
Translate This page:
SUBSCRIBE TO OUR E-NEWS