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.
These are Facebook groups for people with DCM and their loved ones. The group offers 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 Websites and Facebook Support Groups
- LMNA Website: https://www.lmnacardiac.org/
- Team Titin – TTN Website: https://titinmyopathy.com/
- DSP Facebook Group: https://www.facebook.com/groups/1125927951265992
- BAG3 Facebook Group: https://www.facebook.com/groups/249008264710213
- LMNA Facebook Group: https://www.facebook.com/groups/128043434571511/?ref=share
- TITIN Facebook Group: https://www.facebook.com/groups/teamtitin
Heart Device Groups
- “Living with an ICD (Support Group)”
- “Pacemaker Support Group”
- “Living with a Medtronic Pacemaker, ICD, or CRT Device”
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 email@example.com.
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
- 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 – 4th Monday of each month from 7-8pm PST
- Creativity & Chronic Illness – A peer support group for those living with chronic illness who would like to express themselves through art facilitated by Jess Minckley, MFA. Every Sunday from 10-11:30am (PST). 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 facilitated by Bartja Wachtel, MSW, LICSW, MHP, CMHS 2nd and 4th Tuesday of each month from 6-7pm PST
- Supporting a Loved One with a Chronic Illness – 3rd Tuesday of each month 5.30 – 6.30pm PST. This group is virtual and is open to loved ones living anywhere.
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: