TOPIC: Patients & Members, Patient Stories, Rare Disease Day
Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew something was wrong, but it took 21 extremely long months of back-to-back testing to simply give that “thing” a name. Merely to define his symptoms… 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 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, Advocacy
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 Forum to discuss the importance of rare disease allies… 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
