Loading Events

Join us September 23rd, 2022 as we meet with the FDA about our needs as an LGMD community!

 

  • What will happen at this PFDD meeting?  This important, monumental effort will give individuals diagnosed with limb-girdle muscular dystrophy types 2A, 2C, 2D, 2E, 2F, and 2I an opportunity to share with the FDA about the experiences and challenges of living with LGMD.
  • Where will the meeting take place?  The meeting will take place virtually and will be live.  Participants will be able to watch the event as it occurs.
  • How can I get involved?  You will also be able to participate in polling and participate in surveys prior to the event to share your needs as an individual living with LGMD with the FDA.  Many individuals will be selected to speak to the FDA either through prerecorded video or during live segments in the PFDD.
  • What do we hope to gain?  The PFDD meeting is designed to engage patients and elicit their unique perspectives. With this information, our goal is to enable the FDA to knowledgably review and approve LGMD therapies that meet the needs and expectations of our patient community.

 

Please note that this initial endeavor represents Phase 1 and will include six LGMD subtypes.  We anticipate additional LGMD subtypes will present to the FDA at future PFDD meetings.

WE NEED YOU! 

Do you want to help us make historical changes for the limb-girdle community?

If so, we need your voice! The subtypes of 2A, 2C, 2D, 2E, 2F, and 2I will be highlighted in this first phase of the PFDD meeting.

Learn more at https://thespeakfoundation.com/pfdd

Share This Story, Choose Your Platform!