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Archives for: May 7th, 2018

NORD 35th Anniversary Blog Series: The Early Years (1980s)

Written by Jennifer Huron on May 7, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for… Read More

NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Written by Jennifer Huron on March 20, 2017

Washington, D.C., March 20, 2017 – The National Organization for Rare Disorders (NORD) and 86 other organizations issued a letter today calling on Congress to take a hard look at the likely significant and life-threatening consequences of the American Health Care Act on millions of patients. The organizations represent Americans… Read More

A Group No One Applies to Join

Written by Jennifer Huron on September 14, 2016

By Elizabeth Silva Anderson, ECD Global Alliance, a NORD Member Organization

An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016

I belong to ECD. A group which no one applies to join.” The spirited mother of four recounts a tale… Read More

Q & A with Russ Illes, Author of Duct Tape Won’t Fix This

Written by Jennifer Huron on June 19, 2015

What can’t duct tape fix?  Russ Illes, author of Duct Tape Won’t Fix This: A Father’s Perspective on Raising a Chronically Ill Child (Riverhaven Books) says men love to use it for everything, but when faced with a sick child,… Read More