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Patient Stories

Zuhriah’s Story in Honor of Rare Disease Day

This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started… Read More

Tucker’s Story in Honor of Rare Disease Day

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,… Read More

NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development

By Debbie Drell, Director of Membership

My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she wouldn’t… Read More

Rare Caregivers Corner: Debra’s Story

One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award.

“I was able to meet and have dinner with one of my Peace… Read More

Rare Caregivers Corner: Q&A with Stephanie

NORD’s Rare Caregiver Respite Program provides eligible caregivers the opportunity to take a much-deserved break while knowing their loved one is being well cared for. Caregiver Stephanie recently answered a few quick questions about… Read More