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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

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

Written by Christina Jensen on April 18, 2018
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… Read More

NORD Reaction to Recently-Enacted Government Spending Bill

Written by Christina Jensen on March 29, 2018

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… Read More