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A Rare Lysosomal Storage Disease
Contact: info@npcfund.org

World Rare Disease Day 2014

World Rare Disease Day 2014

World Rare Disease Day is an event that occurs annually every February 28th, assuming it isn't leap year! Essentially the last day of February. The goal behind the movement is to raise awareness about rare diseases and promote improved access to treatments and medical opportunities for individuals with rare, genetic diseases; An overall better support system for families.

This upcoming Feb. 28th is representing the seventh annual event!

How can you help?

We thought you'd never ask! A great resource is GlobalGenes.org. They do a fabulous job of creating opportunity such as wearing blue jeans the day of, wearing the gene's ribbon as a symbol of support, ideas on planning events, and also an upcoming Rare Disease Legislative Advocates (RDLA) in Washington, DC February 25-28, 2014.

Niemann-Pick Type C disease is one of many of the lysosomal storage diseases out there. These families just like the others experience extreme hardships, limitations on enjoying life to the fullest, and being able to support the burden placed upon their shoulders to care for their loved one(s). These families are like you and me…. they still have to provide income for their family, they get up each morning, and they try to wear a face of confidence to get throughout the day.

Your support in any generous way is extremely encouraged. It isn't always a monetary value to symbolize helping but other little actions like writing a blog post, hanging a flyer about the disease up in your break room, or simply a quick post on your social media sites.

Genes, we all have them.

World Rare Disease Day 2014

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