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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 at February 2, 2019 01:43 pm 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 1, 2019

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

Brazeau Family Story for Rare Disease Day

Posted at February 2, 2019 09:34 am by Christina Jensen

The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his  family’s journey of receiving a diagnosis for their son, Archer, of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Read on for a harrowing account on hearing about a life-changing diagnosis, and how the Brazeau family was able… Read More

January 16, 2019

TOPIC: Advocacy, Events, Featured News, Patients & Members, Press Releases, Rare Disease Day, Sticky Posts for Homepage

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Posted at January 1, 2019 10:45 am by Christina Jensen

Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for people to literally and figuratively “show their stripes” in… Read More

January 9, 2019

TOPIC: Featured News, Get Involved, Patients & Members

NORD IAMRARE KAT6A Patient Registry Launched

Posted at January 1, 2019 09:38 am by Christina Jensen

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, KAT6A, officially launched their patient registry, KAT6A Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased to share the press release that was… Read More

December 17, 2018

TOPIC: Events, Featured News, Patients & Members

The 2019 Rare Impact Awards will take off at Space Center Houston, Saturday, June 22!

Posted at December 12, 2018 01:04 pm by Laura Mullen

This June in Houston, Texas, the 2019 Living Rare, Living Stronger | NORD Patient & Family Forum will bring the rare community together with physicians, medical students and allied health

professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding -… Read More