Rare Disease Day 2013: Help Spread Awareness

A guest post by Wendy White, Founder & President of Siren Interactive

Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special because it’s the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop rare disease therapies, and the founding of the National Organization for Rare Disorders (NORD).

For 2013 the theme for Rare Disease Day is “Rare Disorders Without Borders.” Nowhere is this more evident than the online space, where rare disease patients and caregivers provide support for one another.

“More than half of the people who have rare diseases are children,” notes Peter L. Saltonstall, president and CEO of NORD. “Challenges faced by patients and their families include delayed diagnosis, few treatment options, and difficulty finding medical experts.”

The purpose of Rare Disease Day is to spread awareness of rare disorders. For example, many people are unaware that 1 in 10 Americans live with a rare disease. To support Rare Disease Day 2013, the team at Siren Interactive has created an infographic on rare diseases. It provides a visually interesting way to learn about orphan conditions and share this information.

A personal connection
For the first two years of her life my daughter, Casey, had medical issues but no diagnosis of what was wrong. Despite some of the best doctors in one of the largest cities in America trying to find a diagnosis, it came down to me, her mother, doing Google searches. I became a “Detective Mom.” Desperate for knowledge, I was able to locate the information that eventually led to the diagnosis of a rare disease: nail-patella syndrome. Today, Casey is thriving, enjoying sixth grade, and playing the violin.

Unfortunately, our long journey to diagnosis and treatment is way too common. This is why Rare Disease Day is so important. I hope you learn something from our rare disease infographic and help spread awareness by sharing it with your community.

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2 Responses to “Rare Disease Day 2013: Help Spread Awareness”

  1. [...] Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness [...]

  2. Susannah Fox says:

    It’s an honor to post Wendy’s essay here on e-patients.net.

    I just received a lovely email from a friend asking if I know of any professional patient navigators who specialize in rare conditions, particularly related to neurology and mental health. I’d be grateful if anyone had a clue — please post as a comment here so everyone benefits.

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