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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

February 22, 2021

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

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Posted at February 2, 2021 03:35 pm by Valaree DonFrancesco

Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. Today, Tristan shares his personal story for Rare Disease Day with WebMD, with information about NORD noted at the end of the article. Read the piece here.

#NORDintheNews

February 12, 2021

TOPIC: Patient Stories, Rare Disease Day

Amy’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 03:29 pm by Valaree DonFrancesco

I am a patient who has lived with systemic scleroderma for over nineteen years, having been diagnosed as a teenager. 

Rare Disease Day is a day when I get to feel like I am making a difference by telling my story and educating the world about how this disease has changed… Read More

February 12, 2021

TOPIC: Patient Stories, Rare Disease Day

Ashlee’s Story in Honor of Rare Disease Day

Posted at February 2, 2021 03:23 pm by Valaree DonFrancesco

was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis and are still something I struggle with today. In studying to be a health care professional, it has been a journey to bring toRead More