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Patient Stories

Tara O’s Story in Honor of Rare Disease Day

Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and also suffer from chronic migraines. I had… Read More

National Attention for Rare Disease Day Airs on Lifetime Television

This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. The impactful segment… Read More

Ramona’s Story in Honor of Rare Disease Day

I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stresRead More

Tara Z’s Story in Honor of Rare Disease Day

I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms… Read More

Hudson’s Story in Honor of Rare Disease Day

I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many of those struggles…. Read More