High-School Students Raise Awareness
Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases.
Read morePublished May 29, 2013 by NORD
Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases.
Read morePublished March 12, 2013 by NORD
Exomes are big news. Sequencing of the protein-encoding part of the genome is increasingly solving medical mysteries in children.
Read morePublished January 19, 2013 by NORD
Reprinted with permission from FDA Matters: By Steven Grossman The Orphan Drug Act (ODA) turned 30 this month, demonstrating that good laws really can have an enduring impact. Amidst the …
Continue reading “Orphan Drug Act at 30: Will Success Become Too Expensive?”
Read morePublished January 15, 2013 by NORD
Whole genome sequencing (WGS) is the genetic test that determines the order of all 3 billion letters in a person’s DNA, and is a technology that has become well known …
Continue reading “Privacy Protection in Whole Genome Sequencing”
Read morePublished December 25, 2012 by NORD
Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act. By portraying on his Quincy, M.E. television show the plight …
Continue reading “NORD Issues Statement on the Death of Actor Jack Klugman”
Read morePublished December 14, 2012 by NORD
Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease …
Continue reading “Campaign to Educate State Legislators for Rare Disease Day”
Read morePublished December 6, 2012 by NORD
Everyone in the rare disease community who watched IBM’s “Watson” computer perform on “Jeopardy” early this year probably started to wonder about the potential of “Watson-like” systems to assist doctors …
Continue reading “Can IBM Watson Replace Dr. Dhaliwal? Probably Not!”
Read morePublished December 3, 2012 by NORD
FDA Commissioner Margaret Hamburg, MD, today announced a new public-private partnership to develop regulatory science that will speed patient access to new medical device technologies. This is the first public-private …
Continue reading “Patients Will Benefit From New Public-Private Partnership”
Read morePublished November 29, 2012 by NORD
December 26 is the deadline for submitting comments on the proposed rule for Essential Health Benefits released recently by the Department of Health and Human Services (HHS). Essential Health Benefits …
Read morePublished November 28, 2012 by NORD
On November 20, 2012, the Centers for Medicare and Medicaid Services (CMS) released the long-awaited proposed rules for health insurance market reforms and essential health benefits. These provisions of the …
Continue reading “Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits”
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