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Rare Disease Day: Awareness Means Equality

Kevin Wohler

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"Rare but Equal." That’s the theme behind Rare Disease Day 2011.

I know what you’re probably thinking. You’re tired of hearing about disease awareness days/weeks/months. Between the ribbons, the social media campaigns, and the marathon walks for a cure, I’m as tired of it as the next person. After all, we only have so much compassion/time/money to give. Right?

But here’s the thing. A lot of people are living with diseases and disorders they didn’t even know existed until they were diagnosed with them. Families are struggling to understand the problems that affect their loved ones because doctors and nurses are under-educated or misinformed.

How often does this happen? More often than you’d imagine.

In the U.S., a "rare" disease is one that affects less than 200,000 people. If you think about it, that’s huge. A disease shared by everyone in a city the size of Shreveport, Louisiana, would still be considered rare.

The National Institutes of Health (NIH) currently has a database of nearly 7,000 diseases and disorders classified as "rare." They estimate 30 million Americans (about 1 in every 10) have a rare disease. About 80% of rare diseases are genetic in origin and about 75% affect children.

30 million Americans (about 1 in every 10) have a rare disease

These are diseases you’ve likely never heard of outside of the Discovery channel or a mention on medical dramas like House M.D. Diseases without celebrity spokespersons or giant foundations researching to find a cure.

In addition to dealing with the symptoms and effects, people with rare diseases have additional concerns, including:

  • Delay in obtaining a diagnosis
  • Misdiagnosis
  • Scarcity of information
  • Psychological burden
  • Lack of support services for patients and families

By highlighting these issues, the hope is to raise awareness of rare diseases and strengthen the voice of patients and advocacy groups. Through events like Rare Disease Day, we can emphasize rare disease research, search for new treatments, and gain equality in care and treatment.

That’s where the "Rare but Equal" idea comes in.

Every life that is affected by a rare disease, is a life affected by disease. Period. Rare diseases may not have celebrity spokespersons or flashy websites, but they need the same things: awareness and advocacy.

As someone born with a rare genetic disorder, I have spent my life explaining to people why I am in a wheelchair. I know firsthand how valuable it is to have a doctor who is properly aware of my special needs. And I am grateful that my doctor took the time to learn everything he did to help make my life better.

In case you don’t have it marked on your calendars, Rare Disease Day is celebrated on the last day of February every year. The first one, in 2008, was held on February 29th, the most rare day of all. This year it will be on February 28th.

To find out more about Rare Disease Day and what you can do to help raise awareness for those living with lesser-known diseases, visit Rare Disease Day USA or the National Organization for Rare Disorders (NORD).


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