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April 23, 2020 News by Mary Chapman

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

April 2, 2020 News by Larry Luxner

NORD’s Advice on COVID-19: You’re Stronger Than You Think

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…

December 3, 2019 News by Larry Luxner

Experts Barry Byrne, Jerry Mendell Lead NORD Webinar on Gene Therapy

A glance around the walls of Barry J. Byrne’s office reveals a lot about the pediatric cardiologist who runs the Powell Gene Therapy Center at University of Florida (UF). In one corner is an unusual painting by 9-year-old Will Barkowsky of Jacksonville, Fla. Will, the first boy with…

August 2, 2019 News by Larry Luxner

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage girls, and has the nation’s third-highest rate of uninsured residents — with 13.9% of all Oklahomans lacking health coverage. As if…

June 5, 2018 News by Larry Luxner

US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases

As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, 9-year-old Jordan finally got the hug he wanted — as well as a kiss on the forehead. The video of…

May 17, 2018 News by Larry Luxner

‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35

The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. The 2018 Rare Impact Awards, to be held at the Andrew W. Mellon Auditorium, will be webcast via Facebook for those…

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Recent Posts

  • Gene, enzyme replacement improve mice’s breathing, limb strength
  • Short-distance walking speed test in Pompe disease is less demanding
  • Nervous system involvement is common in Pompe disease: Study


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