Published February 28, 2014 by NORD
The Food and Drug Administration’s Office of Orphan Products Development (OOPD), in collaboration with the FDA Center for Drug Evaluation and Research (CDER), has launched a web-based educational tool for …
Continue reading “FDA Creates New Web-Based Educational Tool About the Agency”
Read morePublished February 21, 2014 by NORD
As Rare Disease Day arrives in time zones around the world, you’ll be able to track its progress on a map on RareDiseaseDay.org hosted by EURORDIS and RareDiseaseDay.US hosted by …
Continue reading “Our Shared Vision for Rare Disease Day”
Read morePublished February 18, 2014 by NORD
NORD was one of four recipients of the first-ever “Patient Advocate Awards” of BioNJ, which represents more than 300 life sciences companies in New Jersey.
Read morePublished 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 January 30, 2014 by NORD
The announcement by Congressman Henry A. Waxman that he will not seek re-election after this term has reminded all of us at NORD — and throughout the rare disease community …
Continue reading “Statement on Congressman Waxman’s Retirement”
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 September 4, 2013 by NORD
Even though Gaucher disease is one of the better known rare diseases and diagnostic testing is available, some patients still go for 10 years or longer without getting an accurate …
Continue reading “Even “Well Known” Rare Diseases Pose Diagnosis Problems”
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”
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