Advocacy

Learn to make your patient voice count!

What to help shape U.S. legislative policies that impact our rare disease families? Learn to make a difference for yourself and others by being a SADS advocate in your community! Learn the legislative process of how a bill becomes law and where the patient voice fits in.

Represent the patient voice for those living with rare SADS conditions - either in your community and/or by sharing your story with your state and federal legislative representatives.

Virtual Media/Advocacy Training Webinar

Learn to share your story succinctly and compassionately! Get tips and tools on how to talk with the media during this training--like how to keep our kids safe during SADS Safe Schools Month in September. The webinar is scheduled for Tuesday evening, August 24 @ 7:30 pm Eastern on Zoom.

Thanks to the EveryLife Foundation for their sponsorship of these trainings.

We'd love for you to join us! Register below to watch the recording.

*First Name:
*Last Name:
*Email Address:
Phone Number:
Address:
*City:
*State or Country:
*Condition Connection - choose all that apply:	I am affected My child is affected My spouse/partner is affected Another family member is affected I lost someone who was affected I am a medical professional Other/Prefer not to respond
*SADS Condition:
*I would like to receive enewsletters and updates:

Online Community
Find it Fast
Warning Signs
- Family history of unexpected, unexplained sudden death under age 40.
- Fainting or seizure during exercise, excitement or startle.
- Consistent or unusual chest pain &/or shortness of breath during exercise.

Advocacy

Learn to make your patient voice count!

Virtual Media/Advocacy Training Webinar

Online Community

Find it Fast

Warning Signs