Scroll
To Top

Patient Stories

Voices of Rare Cancer: Kristin’s Story

This story is my rare cancer syndrome journey. I have a rare genetic illness called PTEN hamartoma tumor syndrome, which was diagnosed in 2011 after I was diagnosed with thyroid cancer in… Read More

Rare Caregiver Respite: Beth’s Story

Earlier this year, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Beth Pruitt, caregiver for her daughter… Read More

Kayte & Ashley’s Gastroschisis Story

The following story was submitted by Kayte and Ashley in honor of July’s Rare Spotlight, Gastroschisis. In this story, Kayte and Ashley reflect on their journey with the condition. 

Read More

Nicole’s Gastroschisis Story

The following story was submitted by Nicole in honor of July’s Rare Spotlight, Gastroschisis.
In this story, Nicole reflects on her difficult journey with the condition; an outlook her doctor’s… Read More

Rare Caregiver Respite: Leah’s Story

Earlier this year, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Leah Schust, caregiver for her young… Read More