Join us September 23, 2022, when we meet with the FDA and other stakeholders about our needs as a patient community!
The goal of this meeting is to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, industry, and academic researchers an opportunity to hear perspectives from individuals with LGMD on the health effects, daily impacts, treatment goals, and decision factors considered when seeking out or selecting a treatment. This meeting is being conducted as a parallel effort to FDA’s EL-PFDD initiative, a commitment under the fifth authorization of the Prescription Drug User Fee Act (PDUFA V) to more systematically gather patients’ perspectives on their conditions and available therapies to treat their conditions.
Please note that this initial endeavor represents Phase 1 and will include six LGMD subtypes. We anticipate additional LGMD subtypes will pursue EL-PFDD meetings in the future.
Do you want to help us make historical changes for the limb-girdle community?
If so, we need your voice! Simply click on the button below to help. The subtypes of 2A, 2C, 2D, 2E, 2F, and 2I will be highlighted in this first phase of the EL-PFDD meeting.
Sign up to be included in the Limb Girdle Muscular Dystrophy Patient Network where you will receive cutting edge research updates from the leading experts in the world such as the GRASP LGMD consortium and also be invited to hear about new clinical trials. When you sign up here, you will also receive the free LGMD News Magazine if you live in the USA. Anyone can join the LGMD Patient Network.