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Archives for: January 21st, 2022

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

Rare Disease Day: Finn’s Story

Written by Maia Craig on January 11, 2022
This is a photo of Finn.

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Finn’s congenital muscular dystrophy (CMD) journey and his parent’s goal of connecting with others navigating a SELENON/SEPN1-related myopathy diagnosis. If you want… Read More