If you know a patient or family with Lafora disease (mutations in EPM2A or EPM2B), especially if you are in Spain, 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 registry with 30-minute follow-up visits every six months. It is free of charge and completed by teleconference.

If you are in Italy, there is a National Lafora Disease Registry. The Italian organizations A.I.L.A. and TempoZero will be able to help you get connected.