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Archives for: January 21st, 2022

Rare Disease Day: Kira’s Story

Written by Maia Craig on January 21, 2022
This is a photo of Kira

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Kira’s journey with a Tatton-Brown Rahman Syndrome (TBRS) diagnosis. If you want to share your rare story in honor of Rare Disease Day,… 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 Pamela Gavin Interviewed on Health Equity by PharmaBoardroom for Rare Disease Day

Written by Valaree DonFrancesco on February 26, 2021

PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD is doing towards achieving equity for the rare community in the United States.

The interview can be read in its entirety… Read More

Head of the Herd: Chandra Clark, VHL Alliance

Written by Valaree DonFrancesco on February 19, 2021

At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.

Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over… Read More