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Rare Disease Day Is Celebrated As Novartis Launches Awareness Presentation At Mountain Park School In Honor of Luc Angevare

Bobbie Peer

Tuesday, March 4, 2014 • 6:00am

BERKELEY HEIGHTS, NJ -  Mountain Park School students and faculty celebrated Rare Disease Day by wearing blue on Friday, Feb. 28, participating in this worldwide day of awareness in honor of third grade classmate, Luc Angevare, who is afflicted with CAPS (Cryopyrin-Associated Periodic Syndromes).  Sylvia Shubert of Novartis Pharmaceuticals Corporation educated Luc's classmates with a first of its kind presentation on Rare Diseases and CAPS.

The National Organization for Rare Disorders (NORD) organized Rare Disease Day as a national campaign to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives; joining together to focus attention on rare diseases as a public health issue. 

"Today meant a lot for me. Now all third graders know what type of disease I have. They understand what happened to me and what type of medicine I take," said Luc. 

"Nearly one in 10 Americans has a rare disease, yet few besides those directly affected understand what it's like to live with such a condition daily," stated the Rare Disease Website.

Mountain Park Principal Jon Morisseau embraced Luc and his family for bringing attention and awareness to Rare Disease Day.  Morisseau welcomed Sylvia Shubert from Novartis Pharmaceutical Corporation who presented to the third grade class providing the students with an understanding about Rare Diseases and CAPS. 

There are nearly 7,000 diseases and conditions considered rare in the United States.  Each disease effects small numbers of people, however, rare diseases as a group affect almost 30 million Americans. Many rare diseases are serious causing debilitating conditions that have significant impact on the lives of those affected.

Certain Rare Diseases are genetic.  Shubert simply explained to the third grade students that people with CAPS can't turn off the light switch because of a "misspelled gene".  The body reacts to the protein by getting hot causing symptoms of fever, rash, muscle joint ache and headache. These symptoms come and go.  

"People that have CAPS feels like they have the flu everyday. If you are trying to understand what it feels like to have this disease, imagine having the flu...that is what it feels like," said Shubert.

We want people to support Rare Diseases, to do research and find other medicine to help people, said Shubert. 

A challenge facing people living with rare diseases is that they experience delayed diagnosis or misdiagnosis. Due to the rareness, many doctors will not have seen,  diagnosed or treated it before.  This can be frustrating and isolating for patients and parents of kids living with rare diseases.  Novartis Pharmaceuticals Corporation provides a website resource that connects people with information, linking people with CAPS to care providers and other people touched by CAPS. The website includes a feature that enables visitors to the site to plug in their zip code to find a doctor that has experience diagnosing and treating CAPS in the person's local area. 

Congressman Leonard Lance, who advocates for Rare Diseases, sent a representative to Mountain Park School to present a United States flag to Luc in honor of his work in raising awareness to Rare Diseases.

"The United States House of Representatives at the requests of the Honorable Leonard Lance, Member of Congress, flew this flag over the US Capital in honor of you for your determination in making awareness for Rare Diseases.  This flag was flown over the US Capital in your honor for all that you do to increase awareness in Rare Diseases, in particular yours, CAPS," said Lance's representative.  

 

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