Rare Disease News

Guest Blog: Tour For A Cure

Published August 3, 2016 by NORD

Categorized in -

Members

By Alison Rockett Frase, Guest Blogger In 1995 our son, Joshua, was born with a very rare muscle disorder called Myotubular Myopathy; an early death was imminent for our first-born. …

Continue reading “Guest Blog: Tour For A Cure”

Advocacy Alert: Illinois Rare Disease Commission Bill

Published July 15, 2016 by NORD

Categorized in -

UPDATE: July 11, 2016 Illinois HB 4576 is close to passing! This bill would establish a Rare Disease Commission that would give patients – many of whom are too young …

Continue reading “Advocacy Alert: Illinois Rare Disease Commission Bill”

RareAction Network℠ Releases May/June State Policy Legislative Tracker

Published May 31, 2016 by NORD

Categorized in -

RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase …

Continue reading “RareAction Network℠ Releases May/June State Policy Legislative Tracker”

NORD Members Share Great Resources for ER Visits During #RareERChat

Published May 27, 2016 by NORD

Categorized in -

Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire …

Continue reading “NORD Members Share Great Resources for ER Visits During #RareERChat”

NORD Hosts Tweetchat with Texas Children’s Hospital on Navigating the Pediatric ER (May 26)

Published May 25, 2016 by NORD

Categorized in -

May 26, 2016 1:00 – 2:00 p.m. EDT A trip to the emergency room with a rare disorder can present challenges. For one, few members of the ER staff may …

Continue reading “NORD Hosts Tweetchat with Texas Children’s Hospital on Navigating the Pediatric ER (May 26)”

Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Published May 23, 2016 by NORD

Categorized in -

Learn more about the Undiagnosed Diseases Network (UDN) by registering for this free webinar (June 3).

NORD Summit 2016

Published May 23, 2016 by NORD

Categorized in -

NORD’s Rare Diseases and Orphan Products Breakthrough Summit will be held in Arlington, VA October 17-18

NORD to Hold Rare Diseases Roundtable

Published May 12, 2016 by NORD

Categorized in -

The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community. …

Continue reading “NORD to Hold Rare Diseases Roundtable”

Happy Mother’s Day from NORD!

Published May 8, 2016 by NORD

Categorized in -

Rare Moms are resilient; fighting the battle against rare diseases day in and day out. Whether they’re a mother dealing with a diagnosis themselves or a mother who is caring …

Continue reading “Happy Mother’s Day from NORD!”

NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

Published April 28, 2016 by NORD

Categorized in -

WASHINGTON, D.C./BOSTON ― April 28, 2016 ―The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage …

Continue reading “NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases”

Rare Disease News

Access State Report Card Data