Individuals & Families

Patient-Focused Drug Development

Tuberous Sclerosis Complex Patient-Focused Drug Development Meeting

Wednesday, June 21, 2017
8:30 am to 4:30 pm
Morning Session (8:30 am – 12:10 pm): Treatments to Prevent the Development of Epilepsy in Infants with TSC
Afternoon Session (1 – 4:30 pm): Treatments to Prevent Development of Angiomyolipomas and LAM in Young Adults with TSC and/or LAM

In-Person Participants
Hyatt Regency Washington on Capitol Hill
400 New Jersey Avenue, NW
Washington, DC 20001

Online Participants
Webcast URL will be posted in June.

The TS Alliance is sponsoring a patient-focused drug development meeting (PFDD) with the FDA on June 21, 2017, at the Hyatt Regency on Capitol Hill in Washington, DC, from 8:30 a.m. to 4:30 p.m. The purpose of this meeting is for individuals affected by TSC and caregivers of dependent adults or children to communicate their perspectives on living with TSC to the FDA. This meeting is free and open to the public, and it will be webcast live online. We hope you will register and make plans to attend in person or online.

The TSC PFDD meeting will be divided into two parts. The morning will focus on input from parents of children with TSC who have experienced, or are at risk for developing, epilepsy. The afternoon will focus on adults with TSC and/or LAM who have experienced, or are at risk for developing, angiomyolipomas or LAM. The TSC PFDD meeting is designed to communicate to FDA the impacts of TSC on individuals’ daily lives, what types of treatment benefits make the most impact on peoples’ lives, and individuals’ and caregivers’ perspectives on how well available therapies are working.

The PFDD meeting will be an in-person meeting with a live webcast for remote viewing, including the ability to respond to polling questions in real time. The TS Alliance will identify and invite a small number of affected individuals and caregivers to participate in panel discussions during the meeting. Panel discussions, comments from the audience—in person and online—and polling questions will be facilitated by a former FDA staff member. We hope you can join us in person or via webcast on June 21.