Living with DCM can be difficult at times, but it’s important to know that you are not alone.
If you or a loved one has been diagnosed with DCM, it can be helpful to connect with others who are going through similar experiences. There are many online resources that can assist DCM patients and their family members to feel more hopeful and supported through this journey.
Please explore the support resources below and click on the links provided to learn more about each resource, and ask your local hospital about support groups in your area.
Facebook groups
DCM-Specific Facebook Groups
These Facebook groups are for people with DCM and their loved ones. The groups offer support, information, and a place to connect with others who understand what you’re going through:
- “Dilated Cardiomyopathy” public group for DCM patients and family members
- “Dilated Cardiomyopathy” private group for DCM patients and family members
Gene-Specific Facebook Support Groups for Patients
- BAG3 Facebook Group: https://www.facebook.com/groups/249008264710213
- DSP Facebook Group: https://www.facebook.com/groups/1125927951265992
- LMNA Facebook Group: https://www.facebook.com/groups/128043434571511/?ref=share
- MYH7 Facebook Group: https://www.facebook.com/groups/1099217447938188
- TITIN Facebook Group: https://www.facebook.com/groups/teamtitin
- TPM1 Facebook Group: https://www.facebook.com/groups/1338519380151432
Don’t see your gene listed? Interested in starting a group for your cardiomyopathy gene? Email us at: patientquestions@dcmfoundation.org
Gene-Specific Websites
- LMNA Website: https://www.lmnacardiac.org/
- Team Titin – TTN Website: https://titinmyopathy.com/
Heart Device Groups
- “Living with an ICD (Support Group)”
- “Pacemaker Support Group”
- “Living with a Medtronic Pacemaker, ICD, or CRT Device”
- “LVAD Support Group Positive people helping LVAD patients, family, friends.”
Heart Failure and/or Cardiomyopathy Groups
- Women with heart failure Cardiomyopathy and other heart conditions
- Cardiomyopathy UK This UK-based organization has a list of support groups for people with cardiomyopathy, including DCM. You can search for a group in your area on their website.
- Heart Failure Support Group This is a private group for people who suffer from heart failure and their family members
- Heart Failure Forum (by Bayer)
Do you have additional questions? Please email patientquestions@dcmfoundation.org.
Websites & Resource Links
- The Strength to Cope: Spirituality and Faith in Chronic Disease
- Counseling / Therapy for Chronic Disease
- Women’s Heart Support Group
- American Heart Association
- American Heart Association Cardiomyopathy Forum
- Pumping Marvelous
Zoom support group meetings
- HeartSisters
- Stanford’s Cardiomyopathy Support Group meets online on the 1st Monday of the month at 6 PM Pacific Time
- Cardiomyopathy UK offers a number of online support groups, including:
- To sign up for any of the groups listed below, please visit: https://www.thecenterforchronicillness.org/programs
- Living with Chronic Illness Support Group
- Creativity & Chronic Illness – A peer support group for those living with chronic illness who would like to express themselves through art. No artistic talent necessary. Only pen and paper needed.
- Living Mindfully with Chronic Illness – A supportive group for those wanting to live mindfully and with self-compassion.
- Supporting a Loved One with a Chronic Illness
- Teens Living with Chronic Illness – A support group for teens ages 15-17.
recorded webinars
Helpful Tips and Ideas for Living with DCM
The following webinars provide tips and ideas for living with DCM, including how to do daily tasks, self-advocate, navigate financial/insurance issues and more.
Click on each link below to view the recorded webinar: