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December 17, 2015

TOPIC: Advocacy

What the Omnibus Bill Means for Rare Diseases

Posted by Jennifer Huron

U.S. SenateUPDATE (12/18/2015 12:20 p.m.):  The House and Senate voted Friday to pass the omnibus spending bill that funds the government through September 2016. The House moved first, passing the government funding bill on a 316-113 vote. The Senate followed with a 65-33 vote. The bill moves to President Obama’s desk where… Read More

December 17, 2015

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events, Patient Stories, Get Involved

Get Involved in Your State on Rare Disease Day

Posted by Jennifer Huron


On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare. Here are some ideas to get started…

capitol-building-logo-design-concept-36879595State House… Read More

December 15, 2015

TOPIC: Featured News

CCHS Family Network

Posted by Lisa Sencen

The CCHS Family Network (CCHSFN) is a voluntary, non-profit, self-help organization dedicated to providing support and information to families with children affected by congenital central hypoventilation syndrome. Congenital central hypoventilation syndrome is a rare neurological disorder of infancy and childhood characterized by a decrease in respiratory function during sleep. Established in 1989, the CCHS Family Support Network consists of… Read More

December 10, 2015

TOPIC: Featured News, Advocacy, Get Involved

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Posted by Heidi Ross

2015 was a bellwether year for the NORD public policy team and some exciting growth was seen that could not have come at a better time; the next few years will be some of the most critical in rare disease public policy since the inception of the Orphan Drug Act in 1983.

Congress will consider legislation impacting all sectors of… Read More

December 9, 2015

TOPIC: Press Releases, Research

NORD Developing 20 Natural History Studies for 20 Rare Diseases

Posted by Jennifer Huron

To further the study of rare diseases, the U.S. Food and Drug Administration (FDA) has awarded a $250,000 grant to the National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders.  NORD will use the grant to develop 20 natural history studies for 20 rare diseases based on… Read More