Published 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 14, 2021 by NORD
Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! As the US sponsor for Rare Disease Day, NORD is leading the call to light up …
Continue reading “How to Light Up for Rare – Rare Disease Day 2022”
Read morePublished February 28, 2021 by NORD
Actor, comedian and director Bob Saget invites you to Show Your Stripes today! While largely recognized for his role as Danny Tanner on the hit sitcom “Full House,” his personal connection to the rare community is less well known. Bob lost …
Continue reading “Actor/Comedian Bob Saget Shares Show Your Stripes Message for Rare Disease Day”
Read morePublished February 26, 2021 by NORD
I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect …
Continue reading “Jason and Nola’s Story in Honor of Rare Disease Day”
Read morePublished February 26, 2021 by NORD
Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs …
Continue reading “Valencia Bella’s Story in Honor of Rare Disease Day”
Read morePublished February 26, 2021 by NORD
PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD …
Read more