Support Groups

Emotional support is crucial when living with a cardiac arrhythmia and /or the sudden loss of a loved one due to a cardiac arrhythmia. We encourage you to join and/or organize support groups that will facilitate emotional support, learning, healing, and increased knowledge. Because SADS diseases are not common and members are geographically spread out, online support groups are often the easiest way to connect with others who also have SADS diseases.

ICD Support Group

This virtual support group is a safe, open space to talk about your experience living with an ICD, and meet your peers who know just what you’re going through! This support group is facilitated by patients for patients. No medical questions will be answered.

@younghearts

This virtual support group for kids or teens is a great way to connect with others around your age group who are also living with a SADS condition. It is designed to provide social interaction with others who have a similar diagnosis. It will include fun, age-appropriate games and activities. Kids group for ages 9-13; Teen group for ages 14-18.

SADS Connection

New Adult groups: SADS Connection. New breakout groups are forming – patient facilitated, by condition (not just those with an ICD). Begins Wednesday, Jan. 19 @ 7:30 pm EST. Join and connect with others with your condition – LQTS, Brugada, CPVT, ARVC,Unknown/seeking diagnosis, etc.

We also have a SADS Foundation Facebook page. Facebook also has a number of disease-specific groups. SADS does not control these groups but they are provided for your information.

Local Support Groups

How to arrange a support group in your area

  • Plan to include a knowledgeable health care provider in your group. This individual can answer specific medical questions regarding LQTS, Brugada Syndrome, CPVT, etc. Your cardiologist may be willing to help or may be able to suggest someone. If not, SADS can provide you with a list of knowledgeable specialists in your state.
  • You may wish to include a social worker or psychologist who can facilitate the meeting.
  • The SADS Foundation would be happy to send invitations out to all the SADS families on our mailing list in your area once you have everything in place.

Location Ideas

It is good to identify neutral public facilities that are easily accessible and conducive to quiet, private and support group meeting. Many of these locations are free or can be rented at a discount rate:

  • Hospital Auditorium
  • Community Health Clinic
  • Public Library
  • University/Community College
  • Community Social Center

Materials Suggested (to have on hand)

SADS is happy to provide literature that can be distributed at your event:

  • FAQs for Medical Providers: Family Practitioners, EMT’s, Nurses, Pharmacists, etc.
  • Brochures for LQTS, Brugada, CPVT, etc.
  • SADS Foundation Newsletters & Brochures
  • Materials for Teachers, School Nurses & Coaches
  • Updated Drugs to Avoid Lists