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Rare Diseases

Rallying Public Support for Awareness of Rare Diseases

Peter L. Saltonstall

President, CEO, National Organization for Rare Disorders (NORD)

Each year on the last day of February, the National Organization for Rare Disorders (NORD) highlights the impact of rare diseases on the lives of approximately 350 million people worldwide. The goal of Rare Disease Day is to increase awareness around rare diseases and to bring to the forefront the many issues rare disease patients, their families and caregivers face every day. Drawing attention to disorders that may not be as familiar to the general public as more commonly known illnesses can be a challenge, even on a national awareness day.

Rare diseases

The unfortunate reality is that rare diseases are actually not so rare. More than 7,000 medical conditions are now recognized as rare (affecting less than 200,000 people) by the National Institutes of Health. They affect between 25 and 30 million Americans, more than half of whom are children. Approximately 90 percent of these conditions are still without an FDA-approved treatment or therapy.

For more than 36 years, NORD has been committed to the identification, treatment and cure of all rare diseases. This year NORD has introduced a new call to action, “Show Your Stripes!” The idea is to raise awareness through creative, collaborative and fun activities that capture the public’s attention leading up to Rare Disease Day on February 28. Why stripes? The zebra is the symbol of rare diseases in the United States and is noted for its distinctive black and white stripes. Just as zebras are unique, so are the members of our community.

Show your support

Wearing stripes on Rare Disease Day is a symbol of solidarity with the rare disease community. Companies and organizations can collaborate on a concept for Rare Disease Day. This could be as elaborate as wrapping a car in stripes, or as simple as encouraging employees to wear stripes for the day. Take a photograph and post it on social media with the hashtags #ShowYourStripes and #RareDiseaseDay to help spread the message. Together we can make an impact.

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