The FDA is looking for patient advocate voices at their Public Meeting on Neurologic Manifestations of Inborn Errors of Metabolism. Read on for information about attending the meeting in person or via webcast on June 10, 2014:
Dear patient stakeholder,
We invite you to attend an upcoming public meeting on neurologic manifestations of inborn errors of metabolism,as part of FDA’s Patient-Focused Drug Development initiative. The goal of the meeting is to hear patient perspectives on the impact of neurologic manifestations of inborn errors of metabolism on daily life as well as patient views on treatment approaches for neurologic manifestations of inborn errors of metabolism.
Date: June 10, 2014
Time: 9:00 am – 1:00 pm
Location: FDA White Oak campus at 10903 New Hampshire Avenue, Silver Spring, MD
Remote access will be available via live webcast for those unable to attend in person.
The patient voice is integral to FDA’s Patient-Focused Drug Development initiative. Patient representatives, such as caretakers or leaders of support groups, are also welcome to attend and share their perspectives. We encourage you to spread the word to your peers, patients, and other patient stakeholders by forwarding on this email and sharing through social media.
In-person and web attendees can register here: www.patientfocusediem.eventbrite.com. Please register by May 27, 2014. Patients and caretakers who are attending in person and are interested in providing comments as part of an initial panel discussion may indicate so in their registration. Panelists will be confirmed prior to the meeting.
A public comment docket is also available, which provides patients and others another opportunity to share their experiences and perspectives with FDA online or through the mail.
For more information, visit the FDA website:
We look forward to this exciting meeting and hope to see you there. If you have any questions, please feel free to contact us at PatientFocused@fda.hhs.gov