IRB Approved at the Study Level

Dec 21, 2020

Calling all People and Caregivers in the Lafora Disease Community:

We need your help!


Take a survey to help better understand what it’s like living with Lafora disease (LD) and to help guide development of new potential LD therapies

In an effort to guide the development of new potential therapies for LD, we are conducting a survey of people living with LD and their caregivers. This survey is intended to help researchers better understand your most bothersome symptoms, the challenges in everyday life, your diagnostic journey and your perspective on participating in future clinical trials for LD.  Results from this survey will be summarized and shared with Ionis and regulatory agencies such as the U.S. Food and Drug Administration (FDA) to incorporate the perspective of people living with LD in the drug development process. These efforts are to ensure that the patient voice is considered in the development and regulation of any new potential therapies.  Results will be accessible to all participants.

We kindly ask that you please take the time to fill out this important survey.

Thank you!


Kristina Bowyer
Vice President, Patient Advocacy

Ionis Pharmaceuticals