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March 21, 2018

TOPIC: Advocacy, Events, Featured News

National Organization for Rare Disorders (NORD) Announces Honorees for 2018 Rare Impact Awards

Posted by Christina Jensen

Washington, D.C., March 21, 2018—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 in Washington, D.C.

The Rare Impact Awards is an annual event hosted by NORD, the leading independent nonprofit organization representing the 30 million Americans with… Read More

April 18, 2018

TOPIC: Advocacy, Get Involved

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

Posted by Christina Jensen
An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by:
  • Increasing rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional $10 million each year for the Rare Disease Clinical Research Network… Read More

April 17, 2018

TOPIC: Patient Stories

Mackenzie’s Mission

Posted by Christina Jensen

In this guest blog post submitted by Mackenzie Boedicker and her mother, Deb,  we share the story of one woman’s mission to alleviate the struggles for those who live with amyloidosis. Mackenzie was diagnosed in 2017 and is doing well as a full-time research assistance and founder of a non-profit organization, Mackenzie’s Mission.


In… Read More

April 12, 2018

TOPIC: Advocacy, Events, Featured News

NORD Shares News on 35th Anniversary Celebration Presenting the Rare Impact Awards

Posted by Laura Mullen

Washington, D.C., April 12, 2018—The National Organization for Rare Disorders (NORD) has announced the latest news regarding the upcoming 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 in Washington, D.C.

 

Master of Ceremonies, Patricia Richardson

Emmy Award nominated actress Patricia Richardson will join us as our Master of Ceremonies. Patricia has long been part of the NORD family, having hosted several… Read More

April 11, 2018

TOPIC: Advocacy, Featured News

NORD Issues Statement Regarding Governor Bevin’s Veto of Kentucky Senate Bill 7

Posted by Laura Mullen

Washington, D.C., April 11, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding Governor Matt Bevin’s Veto of SB 7, the Kentucky Rare Disease Advisory Council:

“Last week, Kentucky Governor Matt Bevin vetoed Senate Bill 7, legislation that would give the hundreds of… Read More

March 29, 2018

TOPIC: Advocacy, Featured News

NORD Reaction to Recently-Enacted Government Spending Bill

Posted by Christina Jensen

After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.

For example, we had greatly hoped that the omnibus would include a bipartisan agreement… Read More