Rare Disease Day, annually held on the last day of February, is a day intended to increase awareness on rare diseases that impact people’s lives globally, and to celebrate the meaningful contributions of those affected. Rare Disease Day celebrates those impacted and their drive to better the world. For example, a plethora of laws have been passed to recognize and increase the livelihoods of rare disease patients, as well as the ever-changing scientific advancements made to develop treatments and cures.

Rare diseases impact so many people, including, but not limited to, the patients, doctors, the patients’ families and friends, etc. While each individual rare disease is considered “rare”, rare diseases as a whole impacts millions of people worldwide. Statistically, approximately 300-400 million people have a rare disease worldwide, affecting not only them, but many outsiders as well. 

Personally, I have a rare disease called Friedreich’s Ataxia, which is a rare, genetic, neuromuscular disorder that affects my coordination and strength. Currently, there are less than 15,000 patients worldwide with Friedreich’s Ataxia. I have seen the firsthand effects of the increased awareness that Rare Disease Day brings, including the immense effects on scientific research as well as building communities full of understanding. I believe that together, in acknowledgement of Rare Diseases, and Rare Disease Day, we can make the world a kinder and better place.

Recognizing and increasing our awareness on rare diseases is crucial to bettering society as a whole. Annually, the EveryLifeFoundation hosts Rare Disease events In Washington, DC. Participants speak to members of Congress to spread awareness about the challenges facing rare disease individuals, including issues with the health care system, legal troubles, and more, in the hopes of advancing rare disease comprehension to create change.

Overall, it is important that we, as a campus, acknowledge the importance of Rare Disease Day and continue to fight systematic issues facing rare diseases currently.