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Archives for: February 25th, 2021

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.

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Tucker’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 4, 2020

This story is about my husband, Tucker. In 2004, we began to notice that he wasn’t able to play guitar like he used to, as well as that he was stumbling and falling down more. We went to the doctor… Read More