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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


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