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January 4, 2016

TOPIC: Press Releases, Advocacy

FDA Approves 21 Orphan Drugs for Rare Diseases in 2015, Sets Record for Second Consecutive Year

Posted by Jennifer Huron

fdaThe U.S. Food and Drug Administration announced today it approved 21 new orphan drugs to treat rare diseases in 2015, nearly half (47 percent) of all novel new drugs approved for the year.  This is the second consecutive year in which the FDA approved more orphan drugs for… Read More

December 28, 2015

TOPIC: Featured News

Cure HHT Foundation

Posted by Lisa Sencen

The Cure HHT Foundation, is a non-profit organization dedicated to increasing public and professional awareness and understanding of hereditary hemorrhagic telangiectasia (HHT), also known as Osler Weber Rendu syndrome. This is an inherited vascular (blood vessel) disorder characterized by direct connections between arteries and veins with no intervening capillaries, or by the dilation of small vessels. These telangiectases occur… Read More

December 18, 2015

TOPIC: Advocacy, Patient Stories

Help Tara Pass School Bus Legislation

Posted by Lisa Sencen
A great supporter of NORD, Tara Notrica, sent some staff members at NORD the following letter with the determination to get an important piece of legislation passed. We’re happy to share her letter with the community in an effort to spread the message and get this legislation passed.