The Externally-led Patient-Focused Drug Development meeting focused on mitochondrial disease just ended, and we are thrilled with the level of participation by the community! We thank all of you who took the time to be involved either in-person or remotely.
As announced during the meeting, we now shift our focus to capturing everyone’s input in a Voice of the Patient report that will be published this summer. An important first step in putting together the report is broadly collecting additional mitochondrial disease patient and caregiver perspectives using a survey tool. If you are 1) an adult patient or a caregiver for someone with muscle-based symptoms (myopathies) or 2) a caregiver of a pediatric patient with brain-based symptoms (neurologic), then please complete the 2019 Patient/Caregiver Voice of the Patient Survey as soon as possible. This is a global survey (no geographic restrictions) and will be open to responses for 30 days, closing on April 28, 2019. The survey contains more detailed questions and responses than those used during the meeting itself, so please complete the survey even if you responded to the polling questions during the meeting.
Please contact firstname.lastname@example.org if you have any questions about the survey. Thank you in advance for your continued support of the UMDF mission and our quest to facilitate the development of treatments and cures for mitochondrial disease.