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Patient Stories

Exciting Rare Impact Awards Announcements

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 registration to theRead More

Deborah Skolaski: 2019 Rare Impact Award Honoree

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, as well… Read More

Madison Shaw: 2019 Rare Impact Award Honoree

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 half years… Read More

Donna Appell, R.N.: 2019 Rare Impact Award Honoree

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 of Ashley’s… Read More

Rare Disease Day 2019 Notes and Successes

This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events,… Read More