Rare Disease Day 2019

On February 28, 2019, the Epilepsy Foundation will join hundreds of patient organizations from around the world for Rare Disease Day. Held on the last day of February each year, Rare Disease Day raises awareness among the general public and key decision makers about rare diseases and their impact. 

Bridging Health and Social Care

 

Organizing care can be very time consuming. This year's theme is "Bridging health and social care" and calls for improved coordination on all aspects of care for people living with rare diseases.

Taking and picking up medications, attending appointments, participating in physical therapy, and other care-related activities can be challenging for the rare disease community. According to a European survey on people living with rare disease and their caregivers:

• 8 in 10 have difficulties completing basic daily tasks
• 7 in 10 reduced or stopped profesionnal activity due to their or their family member's rare disease
• 2 out of 3 caregivers spend more than 2 hours a day on disease-related taks
• 3 times more people living with rare disease and caregivers report being unhappy and depressed than the general population

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 in the United States 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

• Organized by EURODIS and Council of National Alliances, rarediseaseday.org has 8 ways you can get involved.
• Join the social media campaign #ShareYourRare.
• Download posters, social media images, messages and other helpful tools. 
• Attend Rare Disease Day at NIH on February 28, 2019, 8:30 a.m. to 4:00 p.m. ET, in the main auditorium of the Natcher Conference Center in Building 45 on the main NIH campus in Bethesda, MD. This year's event will include presentations, posters, exhibits, artwork, and tours of the NIH Clinical Center. Admission is free and open to the public. You can also attend via webcast.
• Read about New Therapy Grant Awardee Dr. Matthew Gentry's research on Lafora disease, a rare, fatal form of childhoold genetic epilepsy.
• Learn about the Rare Epilepsy Network, a registry designed to collect information about people with rare epilepsies. REN supports and encourages research, better understand these conditions, develop treatments, and improve the lives of people affected. REN enrollment is currently closed, but to find out when it opens again provide your contact information here.