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July 7, 2017

TOPIC: Featured News, Medical, Research

NORD Publishes New Rare Disease Report on Bosma arhinia microphthalmia (BAM) syndrome

Posted by Christina Jensen

Washington, D.C., July 7, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Bosma arhinia microphthalmia (BAM) syndrome. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare… Read More

June 30, 2017

TOPIC: Advocacy, Featured News

NORD Rare Action Network℠ Releases Summer 2017 State Policy Legislative Tracker

Posted by Christina Jensen
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NORD is pleased to share the Rare Action Network’s Summer 2017 State Policy Legislative Tracker.  This document shows, state-by-state, which legislation we are tracking to help improve the lives of people and families with rare diseases.  Together, we are taking action in 42 states and the District of Columbia.  Let’s keep going – together, we are strong!  

Questions?
For questions related… Read More

June 29, 2017

TOPIC: Advocacy, Get Involved

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Posted by Christina Jensen

Update: June 29, 2017–Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government, passed in the Senate. Director of State Policy at the National Organization for Rare Disorders (NORD), Tim Boyd, said, “With the passage of HB 239, rare disease patients… Read More

June 29, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan

Posted by Lisa Phelps

Washington, D.C., June 29, 2017 — The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the FDA’s announcement of its Orphan Drug Modernization Plan:

“NORD is grateful to FDA and its recently-appointed Commissioner, Dr. Scott Gottlieb, for its commitment, announced June 29, to eliminating the orphan… Read More

June 27, 2017

TOPIC: Advocacy, Featured News, Get Involved

NORD Issues Statement in Response to Delay in Consideration of the Senate Better Care Reconciliation Act

Posted by Christina Jensen

Washington, D.C., June 27, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the delay in consideration of the Senate Better Care Reconciliation Act:

“Today, Senate Leadership announced they will not hold a vote this week on the Better Care Reconciliation Act… Read More