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August 2, 2019

TOPIC: Patient Stories

Rare Caregiver Respite: Beth’s Story

Posted at August 8, 2019 08:54 am by Christina Jensen

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 and one of the first to participate in the new program, shared how she will utilize the respite.

“My daughter, Danielle, and I travel to visit… Read More

July 29, 2019

TOPIC: Patient Stories

Kayte & Ashley’s Gastroschisis Story

Posted at July 7, 2019 11:23 am by Christina Jensen

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. 


When I received my daughter Ashley’s gastroschisis diagnosis in 2005, there were no options available for support. This was my first pregnancy and… Read More

July 18, 2019

TOPIC: Patient Stories

Rare Caregiver Respite: Leah’s Story

Posted at July 7, 2019 09:12 am by Christina Jensen

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 son and one of the first to participate in the new program, shared how she recently spent her break.

“I was asked to be in my… Read More

July 11, 2019

TOPIC: Patient Stories

Rare Caregiver Respite: Debra’s Story

Posted at July 7, 2019 02:44 pm by Christina Jensen

In May, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Debra Barnum, one of the first caregivers to participate in the new program, shared how she recently spent her break.

“I was able to meet and have dinner with… Read More