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Archives for: April 18th, 2018

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

Written by Lisa Sencen 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

Another Successful Rare Disease Day®

Written by Lisa Sencen on March 7, 2018

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018.  On this day, everyone RDD-LOGO-18-stickycomes together globally to bring attention to all 7,000 rare diseases that combined affect 30… Read More

Changing the Landscape of Rare Disease Research

Written by Valaree DonFrancesco on March 2, 2018

*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`

 

A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly… Read More

Current Funding Opportunity: NORD Research Grants for Rare Diseases

Written by Lisa Sencen on February 8, 2018

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced the availability of three research grants as part of its Rare Disease Research Grant Program. NORD encourages all U.S. and international researchers interested in… Read More

Raise Your Hand for Rare Disease Research

Written by Lisa Sencen on February 3, 2017

By raising your hand, you can show your support for the 30 million Americans with rare diseases.

Simply click here and Lundbeck will donate $1 to rare disease research (up to $10,000 for the campaign).  The donations will be added to a general research fund managed by NORD.  The campaign will run through the month of February in honor of Read More