Scroll
To Top

Archives for: February 28th, 2021

Jason and Nola’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 26, 2021

I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect of daily life. I find myself having to be more attentive and always “on”… Read More

Valencia Bella’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 26, 2021

Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs so tight that it caused extensive nerve damage and… Read More

NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Written by Valaree DonFrancesco on February 25, 2021

The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare Disease Day, storytelling, NORD’s “Show Your Stripes” campaign, and how the organization’s patient advocacy work has continued during the pandemic.

Read More

Tara O’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 24, 2021

Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and also suffer from chronic migraines. I had symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several… Read More