Everyone Knows Someone With A Rare Disease
On the last day of February each year, Rare Disease Day is observed around the world. You may think this has no significance for you, but everyone knows someone with a rare disease.
According to the National Institutes of Health (NIH), nearly 30 million Americans have rare diseases. That’s almost 1 in 10 of us. There is probably not a family in the U.S., or anywhere, that is not affected by at least one rare disease.
The purpose of having a special day is to raise awareness and focus a spotlight on the challenges of living with rare diseases. Patients and those seeking to help them will host special events in their communities or post photos, stories or videos online.
The National Organization for Rare Disorders (NORD), a nonprofit organization that helps people with rare diseases, is the national sponsor of Rare Disease Day in the U.S. NORD works with other sponsors in more than 60 nations to plan the theme and activities for each year.
This year’s theme is “Rare Disorders Without Borders.” Events planned in the U.S. include:
- State House events for legislators, the media and the public in several states.
- Conferences and awareness events at hospitals and universities such as those planned by the University of Minnesota and the University of Notre Dame.
- A two-day conference for patient organizations and researchers at the National Institutes of Health in Bethesda, Md.
- Virtual events such as one for people with movement disorders.
You can read about these and other plans on the national website hosted by NORD: http://www.rarediseaseday.us/. There, you’ll find a “Handprints Across America” photo gallery and a Rare Disease Day Research Hall of Fame.
Why Do We Need Rare Disease Day?
People with rare diseases often feel isolated and alone. Having a Rare Disease Day observed around the world on the same day each year is a way to show solidarity and provide connection.
There are nearly 7,000 diseases considered rare in the U.S., and they tend to be serious or even life threatening. Only a few hundred have treatments, and many are not being studied by medical researchers. Find more on NORD’s website, http://www.rarediseases.org/, including a database of patient organizations and support groups to help you connect with others.
After all, as NORD’s slogan says: Alone we are rare. Together we are strong.
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