By Kimberly Smith, PHA InternFebruary 28th is Rare Disease Day and it’s time to celebrate! Rare Disease Day was established in 2008 by EURODIS (Rare Disease Europe) and its Council of National Alliances, and is celebrated annually on the last day of February. Rare Disease Day was created to raise awareness and advocate for rare diseases that many people are unaware of, but that so many in the world are affected by. Events are held in countries throughout the world, from here in the United States to Spain, Japan, and everywhere in between! Many people use this day as an opportunity to raise their voices about rare disease and go to their local politicians and advocate, and events are happening at State Houses across the country, sponsored by the National Organization for Rare Disorders (NORD).
The Global Genes Project, a non-profit organization dedicated to rare and genetic diseases, is also celebrating Rare Disease Day with various events and activities dedicated to raising awareness. Their “Wear That You Care” campaign allows participants to order, for a small donation, a “Genes Ribbon” to wear along with their favorite pair of jeans to show their support and raise awareness for rare and genetic diseases. Click to learn more about the Global Genes Project and their Rare Disease Day events.
There are so many ways you can celebrate Rare Disease Day! Here’s a few ways some members of the PHA Community celebrated last year:
- Last year on Rare Disease Day Colleen went in for a haircut and decided to donate 12 inches of her hair to Locks of Love! She had planned on donating it sometime in the future, and after a little encouragement from her hairdresser, she decided it would be a great way to mark the day.
- Rachel made cupcakes with names of rare diseases on them to celebrate last year. Delicious!