Published February 3, 2014 by NORD
The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research …
Continue reading “Building on Policy Momentum”
Read morePublished December 16, 2013 by NORD
CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for …
Read morePublished November 4, 2013 by NORD
Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were …
Continue reading “Staying Focused on What Really Matters About the ACA”
Read morePublished October 23, 2013 by NORD
NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis? We were stunned at …
Read morePublished August 29, 2013 by NORD
It seems like just yesterday the Supreme Court handed down its controversial decision to uphold much of President Obama’s monumental healthcare reform bill, the Affordable Care Act. But with …
Continue reading “Enrollment in Your Health Insurance Marketplace”
Read morePublished June 14, 2013 by NORD
Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and …
Continue reading “Supreme Court Decision Consistent With Longstanding NORD Position”
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 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 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”
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