February 28th is Rare Disease Day — a worldwide event hoping to improve the lives of the 300 million people worldwide who are living with rare diseases by raising awareness about the impact of rare diseases among policy makers, the scientific community and the general public. It was launched in 2008 by EURODIS and takes place on the last day of February each year in more than 65 nations. The U.S. program is led by the National Organization of Rare Disorders (NORD). Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse.
At the center of Rare Disease Day is the belief that everyone deserves access to quality healthcare and support, regardless of their condition. As we raise awareness for rare diseases and work towards better treatment and care, it is important to remember that everyone can play an important role. Whether advocating for policy changes, supporting research, sharing personal rare disease stories, making donations, or spreading the word about the impact of rare diseases, each of us can help make a difference in the lives of those impacted.
There are many Rare Disease Day events scheduled throughout the country and the world, including “FDA’s Rare Disease Day 2023” and “Rare Disease Day at NIH“. You can also find many other events across the globe on the official Rare Disease Day website.
Please join us to make fibrolamellar carcinoma one of the most prominent disease voices raised this year!