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 Online Community
CCF offers members a private group where families from around the world can share stories, news, and information, as well as access CCF resources and listings for pediatric cardiomyopathy specialty centers. Upon registering with CCF, members are automatically invited to join the online community.
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 concerns. These sessions take place on the CCF Connect Online Community.
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 here.
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.
Coffee and Chat
CCF periodically schedules chats through the private on-line community, CCF Connect. 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 here.
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 here.
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, click here.
CCF Inspiration Corner
CCF offers an online bulletin board where CCF families can share happy moments, achievements and successes with other cardiomyopathy families. To post inspirational narratives, photos, quotes and website links, click here.
For more information about these services, please contact CCF's Family Support and Outreach Director. We would like to hear from you if you have a suggestion for a CCF Connect forum guest, if you are interested in starting a support group in your area, or training to be a parent ambassador.