Global awareness event spreads to Alaska

Amelia Cooper/Sun Star Reporter
January 29, 2013

“Honestly, until a few months ago I had no idea such a thing existed,” graduate student Marissa Hajduk said in an email, “but life is odd like that.”

Hajduk recently found herself involved with Rare Disease Day, an international event to raise awareness and promote research of the thousands of rare diseases afflicting the world population. These diseases range from Crohn Disease and Reye Syndrome to lesser known diseases such as Pelizaeus-Merzbacher Disease and Wegener Granulomatosis. Nearly one in ten Americans suffer from rare diseases, according to Rare Disease Day USA’s website.

The European Rare Disease Organization established Rare Disease Day in 2008. According to their official website, 63 different countries celebrated the event in 2012, including Switzerland, Costa Rica, Brazil and Canada. This is the fifth year that Rare Disease Day will be observed in the United States.

The economic and social challenges that face those diagnosed with rare diseases are largely universal. The slogan for 2013 is Rare Disorders Without Borders, “to convey the global solidarity of the rare disease community,” according to the Rare Disease Day website.

Rare Disease Day is always observed on the last day of February. This year, the holiday will be on Feb. 28.

There are a multitude of ways to become involved. The official website has a list of possibilities including sharing your story, becoming a partner or ambassador and otherwise informing yourself and others about rare diseases.

Hajduk is currently the only Alaskan ambassador. She is promoting the event at the university. “There are no current events planned for the campus (or Alaska in general), but I’m hoping to change that at least on the campus level,” Hajduk said.

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2 Responses

  1. T.Franzen says:

    In Alaska (if you look at http://www.raredisease.org) in US – you will see under handprints across america, view pictures already submitted – that you have a runner in the Iditarod (female) running for Rare Disease Day with her team of sleddogs who made it onto the event qualifing despite her own disease.

  2. T.Franzen says:

    Look under events and you will find your Iditarod runner and the event listed and also posted in handprints across america pictures already submitted on this site.

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