TOPIC: Patients & Members, Patient Stories
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
TOPIC: NORDPod
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
This Request for Proposal (RFP) is for the creation of a logo and branding guidelines for the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), a project led by Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD) with funding and support from the U.S. Food and Drug Administration (FDA) [Critical Path Public-Private Partnerships Grant Number… Read More
TOPIC: Patients & Members, Patient Stories
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
TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer
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
