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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.


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

February 10, 2021

TOPIC: Featured News, Rare Disease Day, #NORDintheNews

NORD Featured in BioNews Service Article on Rare Disease Day Happenings

Posted at February 2, 2021 10:34 am by Valaree DonFrancesco

In “Pandemic Won’t Stop Rare Disease Day on Feb. 28,” an article by BioNews Service’s Mary Chapman that ran on 2.10 and is being picked up by 25+ of BioNews’ rare disease community-specific newsletters, NORD and our Rare Disease Day offerings are featured prominently, including:

  • Quotes from Peter L. Saltonstall
  • Information on the Show Your Stripes campaign and the… Read More

January 28, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Rare Disease Day

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

Posted at January 1, 2021 12:13 pm by Valaree DonFrancesco

Washington, DC, January 28, 2021 Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. RRead More