On March 4, LSC joined the community in support of Rare Disease Day by inviting people, families and caregivers living with rare diseases to spend the afternoon with us. The day included hands-on sensory activities such as live animal encounters and slime making, and guests also enjoyed self-guided exploration of the center including theater and planetarium shows.

Rare Disease Day was first launched in 2008 on February 29th, a “rare” date that occurs only once every four years. As a tradition, Rare Disease Day takes place every year on the last day of February. This global awareness day is dedicated to educating the public and elevating people’s understanding of the approximately 7,000 different types of rare diseases and disorders, and the special challenges impacted people and families face every day. This day also serves as an opportunity to reinforce the importance of ongoing rare disease research aimed to develop life changing medicines for the rare disease community.

Although Rare Disease Day occurs at the end of February, the global impact of ongoing events and efforts to raise awareness of rare diseases is far-reaching – beyond just one day.

For the second year in a row, we were excited to partner with Ovid Therapeutics Inc. (a New York-based biopharmaceutical company focused on developing medicines for rare neurological disorders) to host an event bringing the rare disease community together and support advocacy for rare disease research. Scientific research is the foundation for advancing the development of therapies and medicines that will transform the lives of the over 30 million people in the United States who are living with rare diseases. At LSC, we passionately support the rare disease community and all those working to improve the lives of those affected.

Collectively, the 25 to 30 million Americans living with a rare disease represents one of the largest patient communities in the United States.

• 1 in 20 people will live with rare disease at some point in their life
• 30 million people in the United States are living with rare diseases
• If all the people with rare diseases lived in one country, it would be the world’s 3^rd most populated country

Due to the vast number of different conditions impacting people worldwide, combined with their individual rarity, many patients with rare diseases go undiagnosed. These conditions also have a significant impact on a precious part of our population – our children.

• There are 6,000 to 7,000 known rare diseases
• Approximately 50% of the people affected by rare diseases are children
• It is estimated that 350 million people worldwide suffer from rare diseases

We are so grateful to the community for participating in our Rare Disease Day event in support of rare disease awareness. If you or a loved one are looking for rare disease resources, you can learn more at the following links:

National Organization for Rare Disorders (NORD)
Global Genes
EURORDIS

Rare Disease Day