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February 13, 2019

TOPIC: Rare Disease Day

Rare Disease Day is a Global Movement

Posted by Christina Jensen

NORD marks 10 years as official U.S. Rare Disease Day sponsor

Since the Rare Disease Day campaign was first launched internationally by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place across the world, reaching hundreds of thousands of people… Read More

February 12, 2019

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

India’s Story in Honor of Rare Disease Day

Posted by Christina Jensen

The following story was submitted by Sarah Stuker in honor of Rare Disease Day. In this story, Sarah shares her family’s journey of searching for and receiving a diagnosis for their daughter, India, of Spinocerebellar Ataxia. 

Share your story for Rare Disease Day here.


This story is about our little girl, India, who will be… Read More

February 12, 2019

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

McCarthy Story in Honor of Rare Disease Day

Posted by Christina Jensen

The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, of a CNTNAP1 mutation. Read on to learn how the McCarthy’s have worked to find other families who are affected by this particular gene mutation and how… Read More

February 11, 2019

TOPIC: Rare Disease Day

Apellis Pharmaceuticals Recognizes Rare Disease Day

Posted by Christina Jensen

Apellis Pharmaceuticals is a clinical-stage biopharmaceutical company focused on the development of novel therapeutic compounds for the treatment of a broad range of life-threatening or debilitating rare diseases through the inhibition of the complement system at the level of C3. Apellis was founded in 2008 with a dedicated focus to boldly control C3, and is the first company to… Read More