Written by Valaree DonFrancesco on February 3, 2020
An essay by NORD President and CEO Peter L. Saltonstall on the Orphan Drug Act is featured in Congressional Quarterly Researcher’s Conquering Rare Diseases special issue.
“Rare disease patients cannot afford to return to the early 1980s. The more than 25 million rare disease patients in the United States are counting… Read More
Written by Valaree DonFrancesco on November 20, 2019
This week, HealthDay published an article entitled “Don’t Give Up: Parents’ Intuition Spots a Rare Illness Before Doctors Do” on patients persistently advocating for their sick child although doctors were initially unable to pinpoint the condition. The article, featuring an interview with Sika Dunyoh, NORD’s Director of Education Programs, was… Read More
Written by Valaree DonFrancesco on September 27, 2019
On September 26, BioNews Service published an extensive article written by reporter Larry Luxner, previewing the upcoming NORD Rare Diseases & Orphan Products Breakthrough Summit, which will be taking place October 21-22 in Washington, DC.
Written by Valaree DonFrancesco on August 20, 2019
In a recent article published by HealthDay entitled “‘Dr. Google’ Helps Some Patients Diagnose a Rare Disease,” NORD’s Mary Dunkle notes common reasons for rare disease diagnosis delays and cautions patients and caregivers regarding online sources, recommending that people “use only trusted sources such as the U.S. National Institutes of… Read More
Written by Valaree DonFrancesco on August 19, 2019
Neena Nizar, founder and president of the nonprofit Jansen’s Foundation, a NORD Member, was interviewed at the Living Rare, Living Stronger NORD Patient and Family Forum by BioNews Service in June. Read her inspiring personal story here.