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February 9, 2022

TOPIC: Rare Disease Day, Members, Patient Stories

Rare Disease Day: Bradley’s Story

Posted at February 2, 2022 09:00 am by Maia Craig
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 website. 

My son Bradley… Read More

February 1, 2022

TOPIC: Rare Disease Day, Members, Patient Stories

Rare Disease Day: Yara’s Story

Posted at February 2, 2022 09:00 am by Maia Craig
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 Rare Disease Day, visit NORD’s Read More

January 27, 2022

TOPIC: Patient Stories, Rare Disease Day, Members

Rare Disease Day: Elizabeth’s Story

Posted at January 1, 2022 09:00 am by Maia Craig
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 of Rare Disease Day, visit NORD’s Read More

January 21, 2022

TOPIC: Patient Stories, Rare Disease Day, Members

Rare Disease Day: Kira’s Story

Posted at January 1, 2022 09:00 am by Maia Craig
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, visit NORD’s website. 

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January 11, 2022

TOPIC: Members, Patient Stories, Rare Disease Day

Rare Disease Day: Finn’s Story

Posted at January 1, 2022 08:30 am by Maia Craig
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 to share your rare story in honor of Rare… Read More