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Archives for: June 30th, 2021

NORD’s Rare Disease Advisory Councils

Written by Valaree DonFrancesco on June 30, 2021

On the show today, it’s all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a stronger voice in state government. Joining us is NORD Director of Policy Heidi Ross, your one-stop human shop to understanding what these councils… Read More

Fifteen Months Later…

Written by Valaree DonFrancesco on June 9, 2021

Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s impact cannot be understated. Millions of lives have been uprooted… Read More

Rare Voices of NORD: Jo-Ann D’Angelo

Written by Valaree DonFrancesco on May 26, 2021

On the show today, Matthew Zachary welcomes Jo-Ann D’Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There… Read More