Scroll
To Top

Archives for: June 17th, 2019

Deborah Skolaski: 2019 Rare Impact Award Honoree

Written by Lisa Sencen on May 20, 2019

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 as behavior. Deborah felt helpless as she observed the struggles that her son, daughter-in-law and Cori… Read More

Madison Shaw: 2019 Rare Impact Award Honoree

Written by Lisa Sencen on May 20, 2019

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 when she was 12 and included acute infections, multiple hospitalizations and almost two dozen befuddled doctors…. Read More

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

Written by Lisa Sencen on May 20, 2019

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 albinism. After leaving the pediatrician feeling patronized, Donna sought answers herself, learned about a rare bleeding… Read More

Tweetchat on Rare Relationships, #lovingrarechat

Written by Lisa Sencen on April 22, 2019

 

Tweetchat Coordinates

When: Monday, April 22, 1:00p.m. – 2:00p.m. ET
Tweetchat Hashtag: #lovingrarechat
Tweetchat Moderator from NORD: @RareDiseases
Tweetchat Moderator from Texas Children’s: @TexasChildrens

About

As a part of NORD’s mission to improve the lives of the 25-30 million Americans impacted by rare diseases, we are honored to… Read More