2017 Rare Disease Day

Epilepsy is a group of conditions with a wide range of seizure types, causes, and associated symptoms. Viewed across the entire spectrum, epilepsy is not rare:

• It is more common than autism, Parkinson’s disease, multiple sclerosis, and cerebral palsy combined.
• It affects 3 million people in the U.S.
• One in 26 people will develop epilepsy at some point in their lifetime.

There are, however, several types of epilepsy that are rare and can be devastating for families. These rare forms of epilepsy primarily affect children who may have hundreds of seizures a day. Some of these children will have a shorter lifespan because of their epilepsy. Overall, rare epilepsies and other rare diseases affect an estimated 25 million Americans.

That’s why the Epilepsy Foundation is joining with other health care organizations to raise awareness about rare diseases on February 28, 2017. Held on the last day of February each year, Rare Disease Day seeks to raise awareness among the general public, policy makers, public authorities, industry representatives, researchers, health professionals, and other decision-makers about rare diseases and their impact on people's lives. Find out how to participate.

Kicking off this awareness day, National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center are hosting Rare Disease Day at NIH.

• Date: February 27, 2017
• Time: 8:30 a.m. to 4:00 p.m.
• Location: Masur Auditorium, NIH Clinical Center (Bldg. 10), 10 Center Drive, NIH Campus, Bethesda, MD 20892
• Cost: Free
• Who is invited? Hundreds of scientists, patients, advocates
• Who can attend? Anyone - the event is open to the public

This special NIH event seeks to raise awareness about rare diseases, the people they affect, and NIH research collaborations that are making a difference. The day will be filled with expert presentations, posters and exhibits, tours of the NIH Clinical Center, and an art show.

What to Else Know about Rare Disease Day at NIH

In support of Global Genes’ participation, attendees are encouraged to wear their favorite jeans. People can share their thoughts, photos, and experiences during the day via social media using the hashtag #RDDNIH.

People with disabilities who need sign language interpreters or reasonable accommodations to attend the event should contact Kimberly Potter at [email protected] or 301-509-3655 and/or the Federal Relay number at 1-800-877-8339. Requests should be made at least 5 days in advance of the event.