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Patient Stories

NORD Establishes Rare Disease Patient/Caregiver Speakers Bureau

speakers-bureau-quoteThe National Organization for Rare Disorders (NORD) has established a Patient/Caregiver Speakers Bureau through which volunteers will share their stories to promote better understanding of… Read More

Tara prior to her diagnosis of Mast Cell Disease.

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

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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

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Giving Spotlight:  Honoring Mom-Mom’s Legacy with Research and Awareness

Nine-year-old Erin told her mom, “Mommy, I hate cancer. Why don’t doctors figure out what causes it?”  Her mom said doctors are trying.  But that was not enough for Erin.  She and… Read More

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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