Published February 28, 2022 by NORD
I am a mom, advocate, fighter and the biggest support to my two-year-old son Braxton, who was born with Phenylketonuria (PKU). My biggest mission since my son was born was …
Continue reading “#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day”
Read morePublished February 28, 2022 by NORD
I was born with a rare genetic condition known as Congenital Insensitivity to Pain (CIP), which leaves an individual unable to sense physical pain. This “disease” or condition, as I …
Continue reading “Removing the Obstacles: Steven’s Rare Disease Day Story”
Read morePublished February 22, 2022 by NORD
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 …
Continue reading “Community, Action and Being Grateful: Rowan’s Rare Disease Journey”
Read morePublished February 17, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Riaan’s Story”
Read morePublished February 9, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Bradley’s Story”
Read morePublished February 1, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Yara’s Story”
Read morePublished January 27, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Elizabeth’s Story”
Read morePublished January 21, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Kira’s Story”
Read morePublished January 11, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Finn’s Story”
Read morePublished December 27, 2021 by NORD
I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in …
Continue reading “Far From “Normal”: Brenda’s Rare Disease Story”
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