December 18, 2015
TOPIC: Advocacy, Patient Stories
Help Tara Pass School Bus Legislation
Posted by Lisa Sencen
Read MoreDecember 17, 2015
TOPIC: Advocacy
What the Omnibus Bill Means for Rare Diseases
Posted by Jennifer Huron
UPDATE (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…
State 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 Tim Boyd
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
