Share Your Story for the EL-PFDD

June, 11, 2024

On Tuesday June 11, we will holding a VIRTUAL, FREE meeting to inform the FDA about the urgent need for new and improved treatments for Long QT Syndrome and CPVT in an Externally-Led Patient Focused Drug Development meeting (EL-PFDD). We NEED YOU to join!

Submit your LQTS and CPVT stories and comments below for our EL-PFDD meeting.

These stories and comments are collected by SADS staff, and may be shared during the EL-PFDD. They also may also be used in the final Voice of the Patient report (with identifying information – like names –  removed).

EL-PFDD Stories and Comments

We are collecting stories and comments from our LQTS and CPVT communities. You can share your personal story, the struggles your family and loved ones living with LQTS and CPVT have faced, or anything else you want the FDA and other key stakeholders (like researchers) to consider.

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SADS Condition

Share Your Stories and Comments.

Please feel free to provide a response to all of the following questions, or to focus your remarks in just one or more areas.
I would like to share my story publicly.
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