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Patient Stories

Help Tara Pass School Bus Legislation

A great supporter of NORD, Tara Notrica, sent some staff members at NORD the following letter with the determination to get an important piece of legislation passed. We’re happy to share… Read More

Get Involved in Your State on Rare Disease Day


On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected… Read More

Living Bella Soul

As Shannon tells her story, she starts with “we.” Shannon was born with a twin sister, Lauryn, who at twenty days of age contracted meningitis and was later diagnosed with cerebral palsy. She spent… Read More

Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 weeks, almost to full… Read More

Life with CGD

In April 2013, the Cooley family welcomed their second child, Sean Ryan. After some problems regarding his weight during the pregnancy, the Cooley’s were thrilled when their healthy baby boy was delivered. At two-and-a-half… Read More