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February 24, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Tara O’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 12:54 pm by Valaree DonFrancesco

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 symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several conditions before this as well. I have done… Read More

February 24, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Rare Disease Day

National Attention for Rare Disease Day Airs on Lifetime Television

Posted at February 2, 2021 11:25 am by Valaree DonFrancesco

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 featured NORD’s Director of Strategic Planning, Lisa Sarfaty, sharing facts about rare disease and information on how to get involved with Rare Disease Day.

February 22, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Ramona’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 07:13 pm by Valaree DonFrancesco

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 stress. I have also been suspected of Behcet’s disease, but doctors have not confirmed this diagnosis. I also often Read More

February 22, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Tara Z’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 07:03 pm by Valaree DonFrancesco

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 started after I lost my former husband to suicide in 2014. My kids were eleven and thirteen at the time. The stress was unimaginable and… Read More

February 22, 2021

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Hudson’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 06:42 pm by Valaree DonFrancesco

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. I graduated with four science degrees in community college and taught at a private school as a preschool teacher. These achievements were both dreams come… Read More