TOPIC: Patients & Members, Patient Stories, Rare Disease Day
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 story in honor of Rare Disease Day, visit NORD’s… Read More
TOPIC: Patients & Members, Patient Stories, Rare Disease Day
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
TOPIC: Patients & Members, Patient Stories, Rare Disease Day
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
TOPIC: Patients & Members, Patient Stories, Rare Disease Day
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
TOPIC: Patients & Members, Patient Stories, Rare Disease Day
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.
