Rare Disease Day 2018

The Epilepsy Foundation is joining other health care organizations to raise awareness about rare diseases on February 28, 2018. 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.

About Rare Epilepsies

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.
• More than 3.4 million people are living with epilepsy in the United States.
• One in 26 people will develop epilepsy at some point in their lifetime.

There are, however, several types of epilepsy that are rare, have difficult to control seizures, 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 combined affect an estimated 25 million Americans.

Get Involved

Rare Disease Day 2018 Poster by EURODIS

• Organized by EURODIS and its dozens of other partners worldwide, the website rarediseaseday.org offers 7 ways to get involved.
• Join the social media campaign, “Show your rare.”
• Download posters, social media images, messages and other helpful tools.
• Join the National Institutes of Health (NIH) and National Center for Advancing Translational Sciences (NCATS) Twitter chat on rare diseases on February 23, 2018, at 1 p.m. ET using the hashtag #NIHchat.
• Attend Rare Disease Day at NIH on March 1, 2018, 8:30 a.m. to 4:00 p.m. ET, in the Masur Auditorium, Building 10, at the National Institutes of Health in Bethesda, Maryland. The event will feature presentations, posters, exhibits, an art show, and NIH Clinical Center tours. Admission is free and open to the public. It will also be webcast.
• Participate in the Rare Epilepsy Network (REN) Registry. The registry is designed to collect information about people with rare epilepsies to support and encourage research, better understand these conditions, develop treatments, and improve the lives and quality of care of people affected. Enroll in the REN Registry.