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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

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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

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January 23, 2019

TOPIC: Featured News, Get Involved, Rare Disease Day

10 Ways to Show Your Stripes this Rare Disease Day!

Posted at January 1, 2019 11:04 am by Christina Jensen
rare disease day show your stripes campaign

The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. While each of the more than 7,000 rare diseases is unique, there are many commonalities that unite our community. To raise awareness around rare disease issues, NORD is promoting specific ways that individuals, organizations and groups can show their stripes in support… Read More

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January 18, 2019

TOPIC: Featured News, Get Involved, Patient Stories, Rare Disease Day

Featured Student: Scarlett Eagle

Posted at January 1, 2019 11:58 am by Christina Jensen

NORD’s Educational Initiatives team spoke with Scarlett Eagle, an undergraduate student at Iowa State University and NORD Students for Rare Club Leader. In this interview, Scarlett talks about her inspiration for starting a NORD Students for Rare Club and where she hopes to see her career go working within the rare disease community.
For more information on NORD’s… Read More

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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

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Copyright ©2019 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.