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Archives for: November 29th, 2019

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

Written by Laura Mullen 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

Providence Full and Half Marathon

Written by Lisa Sencen on May 7, 2017

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Providence Marathon. Click here to apply.


About the Team

When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for… Read More

St. Jude Rock ‘N’ Roll Nashville Marathon

Written by Lisa Sencen on April 29, 2017

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Nashville Marathon. Click here to apply.


About the Team

When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for… Read More