SUPPORT SERVICES

Through CCF’s support services, families affected by pediatric cardiomyopathy can have access to disease information and emotional support. Resources are offered in both English and Spanish.

CCF Connect Online Community

Families from around the world can discuss relevant topics and share their experience on this private online forum. Registered members can also download fact sheets, Q&A transcripts, and profiles of cardiomyopathy specialty centers. Upon registering with CCF, members are automatically invited to join CCF Connect.

Expert Q&A Sessions

Several times each year, medical and healthcare professionals are scheduled to answer questions on topics such as medications, genetic testing, activity restrictions, and psychosocial concerns. These sessions take place on CCF Connect.

CCF Family Facebook Group

In additional to CCF Connect, this Facebook discussion group provides families with another convenient platform to ask questions, discuss concerns, and share in the lives of others facing similar situations. To join the Facebook community group, click here.

Webinars

Webinars featuring experts in the field are offered periodically to cover topics such as activity restrictions, transitioning to adult care, and advancements in treatment options. To view past webinars, click here.

Parent Ambassadors

CCF’s Ambassador Program connects new families with registered members in their area who are trained to provide resources, guidance, and support. For more information, click here.

Youth Programs

Programs tailored to teens and young adults include a Facebook discussion group, buddy matching program, and Youth Ambassadors. For more information, click here.

For questions about CCF's support services, please contact CCF's Director of Family Outreach & Support.