On February 26, LSC was fortunate to commemorate Rare Disease Day by spending the afternoon with people, families and caregivers living with Angelman syndrome and Fragile X syndrome.

Rare Disease Day, which is celebrated annually across the globe on the last day of February, is a special awareness day dedicated to elevating the public understanding of rare diseases, calling attention to the special challenges impacted people face and an opportunity to reinforce the importance of science and research in developing new medicines and advancing understanding of rare diseases.

According to the National Institutes of Health (NIH) in the U.S., a disease is rare if it affects fewer than 200,000 people. Quick facts about rare diseases:

• It is estimated that 350 million people worldwide suffer from rare diseases.
• There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.
• 30 million people in the U.S. are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
• If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
• 80 percent of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear.

Rare Disease Day