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Archives for: July 12th, 2022

Take Action: Share Your Story with the White House and Help Explain Why Medical Nutrition Is Critically Important

Written by Valaree DonFrancesco on July 12, 2022

Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate nutritional intake. Despite medical necessity, many insurers do NOT cover medical nutrition. As a result, people with certain rare diseases and their families… Read More

Rare Disease Day: Riaan’s Story

Written by Maia Craig on February 17, 2022
A photo of Riaan and his mother

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Riann’ s journey with Cockayne Syndrome and his family’s wishes for the rare disease community. If you want to share your rare… Read More

Rare Disease Day: Bradley’s Story

Written by Maia Craig on February 9, 2022
A photo of Bradley wearing a blue and white shirt and mint green shorts

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Bradley’s journey with Infantile Myofibromatosis. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s Read More

NORD Gives Back: Advocacy and Action

Written by Maia Craig on February 3, 2022

Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family… Read More

Rare Disease Day: Yara’s Story

Written by Maia Craig on February 1, 2022
A photo of Yara

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Yara’s journey with Jordan’s Syndrome and her family’s plan to raise awareness this #RareDiseaseDay. If you want to share your rare story in honor of… Read More