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Archives for: February 12th, 2019

McCarthy Story in Honor of Rare Disease Day

Written by Christina Jensen on February 12, 2019

The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, of a CNTNAP1 mutation. Read on to learn how the McCarthy’s have worked to find other families who… Read More

Another Successful Rare Disease Day®

Written by Christina Jensen 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

Advocacy Alert: Tell Congress to Act Now and Pass FDA User Fee Agreements

Written by Jennifer Huron on April 5, 2017

Lawmakers are currently considering legislation to reauthorize FDA user fees. The FDA largely relies on user fees to operate and review innovative drugs, biologics, and devices.  Not only does this legislation provide critical funding for FDA to quickly review products, but the user fee agreements also provide patients and… Read More