February 20, 2014 at 6:00 AM
BERKELEY HEIGHTS, NJ - Mountain Park School welcomes Novartis and NORD (National Organization for Rare Disorders) on Rare Disease Day, Feb. 28. This visit by Novartis and NORD is the first of its kind by the two organizations before launchig a national outreach to educate students about CAPS and Rare Diseases. The presentation will include a slide show and demonstrations showing students how rare "rare" diseases are.
"Rare Disease Day is an annual worldwide awareness-raising event to bring widespread recognition of rare diseases as a global health challenge," stated the Rare Disease Day website, bringing awareness through sharing experiences faced by rare disease patients and families. The day is celebrated on the last day of February every year. It was established by EURORDIS in 2008. NORD partnered in the initiative to sponsor Rare Disease Day in the United States in 2009.
Saskya Angevere and her family have been instrumental in bringing Rare Disease Day to Mountain Park. Her son Luc, a third-grade student at Mountain Park School, is afflicted by the rare disease CAPS (Cryopyrin-Associated Periodic Syndromes). CAPS are part of the growing family of autoinflammatory diseases. (Not to be confused with autoimmune disease such as Lupus or Rheumatoid Arthritis.) A person with CAPS has a genetic mutation that affects their body's ability to shut down their inflammation makers, so their body is constantly under attack.
Wear blue on Feb. 28 to bring awareness to Rare Disease Day. Click here to learn more.