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October 15, 2021

TOPIC: Patients & Members, Patient Stories

From a Horse to a Zebra: Dana’s Rare Disease Story

Posted by Rohan Narayanan

I was five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped and cheered with the others in the bleachers. Then, my life changed. I slipped and fell through the bleachers. Climbing back up, lifting my pant leg, the tear… Read More

October 13, 2021

TOPIC: NORDPod

The Strength of Families

Posted by Valaree DonFrancesco

On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained infertility. Endless cycles and tens of thousands of dollars later, they… Read More

October 5, 2021

TOPIC: Patients & Members, Patient Stories

Saida’s Story of Strength

Posted by Rohan Narayanan

I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full of challenges, and I want to bring awareness to what I go through so that anyone else struggling can find comfort and support in my… Read More

September 30, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Posted by Rohan Narayanan

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone when faced with a diagnosis of a rare disease… Read More