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An overlook of Rare Disease Day

Angelica Edwards, Staff Writer

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February 28th marks Rare Disease Day which is organized by EURORDIS in an effort to highlight the magnitude of rare diseases and their potential solutions. This year, EURORDIS has chosen to make research the theme of the annual event because of the growing need for research in the rare disease community. For a disease to be considered rare in the United States, 200,000 people or fewer must have it according to the National Institutes of Health (NIH) standards. One in ten Americans has a rare disease, so theoretically, that means Green Hope has close to 292 students who have a rare disease.

Many rare disease patients find resources through The National Organization for Rare Disorders (NORD), which advises patients financially and medically about their diseases and how they should go about addressing them. States uniquely address rare diseases both directly and indirectly through their medical policies, ranging from medical food to biosimilar prescriber communication according to  2016 study by NORD. The study analyzed all 50 U.S. states and measured their friendliness towards people who have rare diseases. The results overwhelmingly suggest the country as a whole is inadequately prepared to address rare diseases, with North Carolina receiving failing marks in four out of seven categories used in the study.

A controversial proposal, known as the Right to Try Act, has been suggested to amend some of the concerns patients with rare diseases. The act would enable patients with rare diseases to undergo experimental treatments not yet approved by the FDA, but has faced backlash by NORD and the FDA for the possible scenario of “bad actors” taking advantage of these patients by giving them a false sense of hope.

Today, students can find posters about rare disease day and miniature zebra’s in an effort to educate and bring awareness to the student body about how people who have rare diseases aren’t so rare at all. Don’t be surprised if you see people with zebras, as they symbolize a rejection to current medical standards, as doctors are associated with the phrase “when you hear hoof beats think horse not Zebra”-but many people in the rare disease community would urge them to think Zebra.

To learn about about rare disease day visit https://www.rarediseaseday.org and https://rarediseases.org.

 

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An overlook of Rare Disease Day