2019 Patient/Caregiver Voice of the Patient Survey: Mitochondrial Disease Externally-Led Patient-Focused Drug Development Meeting
No matter where you are located in the world, you can still be a part of the EL-PFDD meeting focused on mitochondrial disease. To contribute your thoughts to the Voice of the Patient report that will be written after the March 29th EL-PFDD meeting and submitted to the FDA, complete the survey below before April 30, 2019. Please note that for this report we are gathering the patient perspective only from adults diagnosed with mitochondrial myopathy (muscle-based symptoms), caregivers for adults with a mitochondrial myopathy, or the parents/caregiver designees representing children with a neurologic manifestation (brain-related symptoms) of mitochondrial disease. Spouses, parents and caregivers of a deceased individual who fits into one of these two patient categories may also complete the survey. Only one survey should be completed per individual (patient) who has mitochondrial myopathy or a neurologic manifestation of mitochondrial disease.
Thank you for contributing to this important project!