Scroll
To Top

Archives for: November 29th, 2019

A First Time for Everything: Marissa’s Running for Rare Story

Written by Valaree DonFrancesco on November 29, 2019
Marissa running the TCS NYC Marathon with Running for Rare

Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis… Read More

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

35 Ways to Celebrate the 35th Anniversary of NORD

Written by Jennifer Huron on March 5, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for… Read More

Becoming a Marathon Runner

Written by Lisa Sencen on September 9, 2016

Written By: Kate Bartlett

“I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving birth to her only daughter, Lily. My co-worker Gia and I discussed the opportunity to… Read More