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Archives for: February 17th, 2022

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

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

Rare Disease Day: Elizabeth’s Story

Written by Maia Craig on January 27, 2022
This is a photo of Elizabeth

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Elizabeth’s journey with SUOX mutation/late onset isolated sulfite oxidase deficiency. If you want to share your rare story in honor… Read More

Rare Disease Day: Kira’s Story

Written by Maia Craig on January 21, 2022
This is a photo of Kira

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Kira’s journey with a Tatton-Brown Rahman Syndrome (TBRS) diagnosis. If you want to share your rare story in honor of Rare Disease Day,… Read More