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Archives for: October 1st, 2019

Rare Cancer Day 2019

Written by Lisa Sencen on October 1, 2019

NORD’s Rare Cancer Coalition is the only united group of rare cancer advocacy organizations in the United States. The objective of the coalition is to form a close-knit, multi-stakeholder community to work collaboratively on issues that the greater rare cancer community faces.

In 2019, the coalition will host the first Rare… Read More

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