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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.

Doctor using a stethoscope checking patient with examining, presenting results symptom and recommend treatment method, Healthcare and medical concept.

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

Our support groups are a safe, open space to talk about living with your condition, and meet peers who know just what you’re going through.

Regional Seminars

Our educational regional seminars bring medical professionals to your area of the country, and give you the opportunity to meet other SADS families who live near you.

News & Updates

Read the latest updates for families with SADS conditions, including updates to the Drugs to Avoid list, device recalls, and other important announcements.

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

Can I still participate in sports with a SADS condition? What about my kids? Here, you’ll learn all about staying active with a SADS condition.

Drugs to Avoid

Learn which drugs to avoid, and get downloadable resources that can help you on the go.

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