Patient & Family Resources
Welcome to Patient & Family Resources. On this page, you’ll find a range of resources – both in-person and virtual – to help you on your heart journey, whether you’ve just been diagnosed or have been living with SADS for years.
Genetic Testing
Learn how genetic testing might be helpful for your family, who in your family should be tested, and what to expect during the process of genetic testing.
Find a Physician
Learn how to select a doctor who can give your family the best possible care, and how to prepare for your appointment.
Family Registration
Register your family with the SADS Foundation! This gives us the tools to send your family tailored information and connect you to clinical studies that can help improve care for both your family and others SADS families.
For Parents (Schools)
Sign up to watch our free webinar series, featuring SADS experts, to learn more about your condition and popular topics like ICDs, anxiety, and parenting.
Pregnancy
Are there any extra precautions I should take if I have a SADS condition and am pregnant? Get answers to your questions about SADS and pregnancy here.
Voice of the Patient Report: ARVC
The subsequent “Voice of the Patient: ARVC ” report is a compilation of the testimonies and survey responses of individuals affected by ARVC from all around the world and is the first-ever report of its kind for inherited heart conditions.
ICD
Learn more about Implantable Cardioverter Defibrillators (ICDs), which are a common treatment option for certain types of SADS conditions.
Insurance
Navigating insurance with a SADS condition can be challenging. Here, you’ll find resources that can help you learn more about appeals, coverage for AEDs, and other common insurance-related questions.
Webinars
Sign up to watch our free webinar series, featuring SADS experts, to learn more about your condition and popular topics like ICDs, anxiety, and parenting.
SADS Live
Learn more about our biweekly SADS Live program, featuring our board president Dr. Michael Ackerman of the Mayo Clinic. Watch interviews with other families, learn about research from experts, and get your questions answered live.
Support Groups
Regional Seminars
News & Updates
Annual Conference
Our yearly International Annual Conference brings together the top international experts with our community. It’s a great place to learn more about your condition and meet other families just like yours.
Sports/Exercise
Drugs to Avoid
Mental Health Resources
Living with a SADS condition isn’t always easy. You may find yourself struggling with anxiety, PTSD, depression, or a sense of isolation following diagnosis; or experience these symptoms as a result of treatment for your SADS condition, like a device.
Grief and Loss Resources
About a quarter of those who experience the loss of a loved one. You can find a list of resources we’ve compiled to help you navigate grief and loss. Above all, we want to let you know that we’re here for you on your journey, and that you are not alone.
Energy Drinks and SADS Conditions
We’ve worked with our Scientific Advisors to update our official guidelines around energy drink intake with a SADS condition on our website
COVID Hub
How does COVID affect those of us with SADS conditions? Are the vaccines safe for the SADS community? Get answers to your COVID-related questions here. This page is updated frequently to reflect the most up-to-date information on COVID and SADS.
Medical Glossary