Published May 21, 2019 by NORD
This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every …
Continue reading “Exciting Rare Impact Awards Announcements”
Read morePublished May 20, 2019 by NORD
Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, …
Continue reading “Deborah Skolaski: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
Living through a lengthy diagnostic odyssey is unfortunately very common for rare disease patients. Madison “Maddie” Shaw’s journey to diagnosis took place over an intense and frustrating two and a …
Continue reading “Madison Shaw: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
When Donna Appell’s one-year-old daughter Ashley exhibited frequent and unexplainable bruising, Donna turned to her toddler’s pediatrician for answers. She was told that the bruising was “easier to see” because …
Continue reading “Donna Appell, R.N.: 2019 Rare Impact Award Honoree”
Read morePublished March 6, 2019 by NORD
Your stripes were shown! See how the rare disease community worked together to make Rare Disease Day 2019 reach the world at large!
Read morePublished February 25, 2019 by NORD
The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for …
Continue reading “Connor’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2019 by NORD
The following story was submitted by Sarah Stuker in honor of Rare Disease Day. In this story, Sarah shares her family’s journey of searching for and receiving a diagnosis for …
Continue reading “India’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2019 by NORD
The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, …
Continue reading “McCarthy Story in Honor of Rare Disease Day”
Read morePublished February 1, 2019 by NORD
The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his family’s journey of receiving a diagnosis for their son, Archer, …
Continue reading “Brazeau Family Story for Rare Disease Day”
Read morePublished January 18, 2019 by NORD
NORD’s Educational Initiatives team spoke with Scarlett Eagle, an undergraduate student at Iowa State University and NORD Students for Rare Club Leader. In this interview, Scarlett talks about her inspiration …
Continue reading “Featured Student: Scarlett Eagle”
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