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SADS Externally-led Patient-Focused Drug Development Meeting

June, 11, 2024

Review the agenda

Submit a Written Comment

Comments are open until July 15, so if you weren’t able to attend but still want to provide input, please submit your comments

 

  • Which LQTS or CPVT symptoms have the most significant impact on your life?
  • How does LQTS or CPVT affect you on best and on worst days? Describe your best and worst days?
  • What specific activities, that are important to you, that you cannot do at all or as fully as you would like because of LQTS or CPVT?
  • How have your symptoms changed over time? How has your ability to cope with the symptoms changed over time?
  • What do you fear the most as you get older? What worries and frustrates you most about your condition?
  • What are you currently doing to manage your LQTS or CPVT symptoms?
  • How well do these treatments address the most significant symptoms of your LQTS or CPVT?
  • What are the most significant downsides to your current treatments and how do they affect your daily life?
  • Short of a complete cure, what specific things would you look for in an ideal treatment for LQTS or CPVT?

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. These will not be part of the Voice of the Patient report.

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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.
I would like to get news and updates from SADS Foundation

Our Sponsors

These generous supporters have made this meeting possible…On behalf of the SADS Foundation, thank you!