Published May 14, 2014 by NORD
To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a …
Continue reading “VHL Alliance and NORD Launch New International Databank”
Read morePublished April 28, 2014 by NORD
Today, along with many others, I was horrified to learn that celebrities, including Shaquille O’Neal, were mocking a man living with ectodermal dysplasia on their social media pages. Read the …
Continue reading “Are Civility and Mature Behavior Really Too Much to Expect?”
Read morePublished March 20, 2014 by NORD
I woke up this morning in a great mood. Something wonderful happened last night. Let’s see, what was it? Oh yeah, that Jeopardy question. Ugh. Then there was the …
Continue reading “Trivia Can Save Lives: How a Jeopardy Question Raised Awareness of a Rare Disease”
Read morePublished March 6, 2014 by NORD
More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax …
Read morePublished March 4, 2014 by NORD
Six months after her daughter Evan Claire was born in 2008, Annette De Bow, 48, of Davis, CA was diagnosed with polycythemia vera (PV), one of a closely related group …
Continue reading “Adventures of an Advocate: Annette De Bow’s Big Journeys”
Read morePublished 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 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”
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