CCF offers a variety of ways for families affected by pediatric cardiomyopathy
to access information and resources, as well as share experience and provide support to one
another. Detailed descriptions on each of the services are listed below. For a complete listing
of CCF support services and resources in Spanish, click here.
CCF Connect Support Forum
CCF offers members a private email discussion group where families from around the world can
share stories, news and information. Upon registering with CCF, members are automatically added
to the discussion forum.
Forum Guest Q&A Sessions
Several times each year, professional guests are scheduled to answer member submitted questions
on topics such as medications, diet, genetic testing, activity restrictions and psychological
CCF Family Facebook Group
CCF offers a closed discussion group for families as an additional way to connect, ask
questions, discuss concerns and share in the lives of others facing similar situations. To join
the Facebook community group, click
Local Support Group Meetings
Meeting several times per year, CCF offers parent-coordinated support groups that meet at
hospitals around the country. New groups are being formed in other states.
For those unable to attend a local support group meeting, CCF periodically schedules toll-free
conference calls in the evening. Topics can range from general discussion to panel discussions
on a particular topic.
CCF offers periodic webinars featuring experts in the field sharing information on a particular
topic relating to cardiomyopathy, such as activity restrictions, transitioning teens to adult
care and advancements in treatment options. To view past webinars click
Based on the individual needs of a family, CCF can put you in touch with another CCF member in
the same area or with similar diagnosis who has agreed to be contacted.
CCF’s Ambassador Program connects new families with CCF registered members who are trained
to provide resources, guidance and support. For more information, click
CCF offers a several programs tailored to teens and young adults, including a Facebook
discussion group, buddy matching program and Youth Ambassadors. For more information, email Gina
CCF Inspiration Corner
CCF offers an online bulletin board where CCF families can share happy moments,
successes with other cardiomyopathy families. To post inspirational narratives, photos,
and website links, click here.
For more information about these services, please contact CCF's Patient
Outreach and Support Manager. We would like to hear from you if you have a
for a CCF Connect forum guest, if you are interested in starting a support group in your
or training to be a parent ambassador.