If you know a patient or family with Lafora disease (mutations in EPM2A or EPM2B), please get in touch with the Lafora Disease Registry at registry@lafora.es.

The registry is based at the University Hospital Fundación Jiménez Dias in Madrid, Spain, where Dr. Serratosa heads the lab. He has been investigating this disease since 1995 and created a dynamic worldwide registry with 30-minute follow-up visits every six months. It is free of charge and completed by teleconference.

There is only one registry in the world. It is not a list. It is separate from the Chelsea’s Hope Patient Contact Form, which is a means for us to connect the Lafora disease community.

The Lafora Disease Registry aims to have a database of living patients with Lafora disease, know their symptoms, stage, and prepare for future clinical trials.

The first step is to sign the informed consent form, so if you are interested, please email registry@lafora.es.