by Nash Malczewski
Rare Disease Day is a special day celebrated every year on the last day of February. It was established on February 29, 2008, which can be considered a rare date because it only occurs once every 4 years. This year, Rare Disease Day is on Saturday, February 29. It celebrates the 400 million people that have one of the 5,000-8,000 rare diseases worldwide. That means that an estimated 1 out of every 15 people have a rare disease.
There are even organizations dedicated to helping people with rare diseases such as the Avalon Foundation. The Avalon Foundation is currently set on helping kids with Hypophosphatasia, a rare disease that can cause bone fracturing and bone deformity. Avalon Budd, founder of the Avalon Foundation states, “Rare Disease Day is a day where we celebrate those who are unique and different in our lives and community and how these people are going through rough times and are finding ways to take them in stride. The Avalon Foundation helps kids and teens going through painful medical treatments by sending them a box full of incentives that they have on a wishlist to help them get through it”. The Avalon Foundation sends gift-boxes called PainBoxes to people with Hypophosphatasia when they take their medicine because it’s incredibly painful, and the gifts just make everything a little more bearable.
People have even held fundraisers every year since 2008 for the many diseases since the day was created. Another active foundation for Rare Diseases would be NORD, or the National Organization for Rare Diseases. They help spread their information on diseases and how to help fight the diseases. Speaking of which, you can even support the battle against rare diseases by donating money or time by volunteering, or even by doing more research on your own and sharing your information. After all, when people need our help, it’s nice to help them, because we may need their help someday.