REN is joining the Epilepsy Foundation

Thanks to your support we have over 1400 patients and care-givers in the Rare Epilepsy Network. The REN baseline survey is now closed, but we will be launching new surveys soon under the Epilepsy Foundation.

The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN registry has patient or caregiver-reported data in order to conduct patient-centered research.

REN is more than 30 advocacy groups strong.

REN includes these organizations:

We are across the United States

with California and Texas tied for the most participants
Top 10 States for REN Participants
State Count
CA 101
TX 101
PA 75
NY 60
FL 59
IL 46
WA 41
OH 38
MI 36
MN 36

and across the World.

with the United States having the most participants
Top countries for REN enrollment
Country Count
United States 1096
Canada 43
United Kingdom 37
Australia 17
Brazil 13
Mexico 8
New Zealand 8
South Africa 8
Italy 7
France 6
India 6
Spain 6
Germany 4
Ireland 4
Netherlands 4
Portugal 4
Russia 4
Switzerland 4
Argentina 3
Israel 3

We include 40 rare epilepsy diagnoses.

with the most common diagnosis being TuberousSclerosis
Top Primary Diagnoses
Diagnosis Count % of Total
TuberousSclerosis 256 17.6 %
LennoxGastaut 207 14.2 %
Dravet 177 12.1 %
Aicardi 100 6.9 %
Hamartomas 91 6.2 %
Doose 76 5.2 %
InfantileWest 67 4.6 %
Dup15q 62 4.3 %
PhelanMcDermid 43 2.9 %
PCDH19 41 2.8 %
CDKL5 32 2.2 %
SCN8A 25 1.7 %
Other Encephalopathy 22 1.5 %
SYNGAP1 18 1.2 %
Ohtahara 17 1.2 %

Our participants are mostly white

followed by mixed race and then Asian
Race Count %
White or Caucasian 974 90%
Mixed 43 4%
Asian 22 2%
Black or African American 14 1%
Other 13 1%
American Indian / Alaska Native 7 1%
Do Not Know 6 1%
Native Hawaiian / Pacific Islander 1 0%

with more girls than boys

for those who specified a gender
Gender Count %
Female 730 53%
Male 657 47%

and between the ages from 1 to 80.

with 8 years old having the highest frequency

Explore more

Click on a dashboard below to see a screenshot with more details. The screenshot will open in another browser window and not interactive.
Demographics
Primary Diagnosis
Secondary Diagnosis
Enrollment Count
Enrollment in the US
Enrollment around the World
Genetic Testing
Quality of Life
Seizure History
Developmental Milestones
Comorbidities and Mental Health
Seizure Medications