Children's Cardiomyopathy Foundation



The Children's Cardiomyopathy Foundation (CCF) offers a private list serve to interested physicians and family members who register with CCF. This email discussion group, CCF Forum, serves as a secure online meeting place for members to share information, ask questions and offer emotional support on issues related to pediatric cardiomyopathy. Guest speakers from the healthcare community or relevant organizations will be scheduled periodically to answer questions from members. To subscribe to the CCF Forum, please first register with CCF at the Registration page. You will then be sent a welcome email with a link to the subscription page.

Registered List Serve Members

To login onto the CCF Forum site, please enter your email address. You will be forwarded to a different website, where you can type in your password to enter the listserve.

Email Address:

To post to the listserve:

If you are a registered CCF Forum member, you can post to more than 90 families and healthcare professionals by sending your email to

To unsubscribe:

Send a blank email to the unsubscribe email address listed on the bottom of your CCF Forum email. Instructions on how to unsubscribe can also be obtained by emailing the Foundation.

To change account settings or password:

Log in above by typing in your email address and then your password. Click on the "My Account" blue tab and then "Advanced" tab to change your password.

To search the message archives:

Log in above by typing in your email address and then your password. Click on the "Search" blue tab and enter in key word.

General Posting Guidelines

1.  Please only post messages of general interest to the group. Personal matters or ongoing threads between two people should be emailed privately off the list.
2.  Please be mindful that messages will be viewed by parents in different situations- some have diagnosed children, some have lost children and some are trying to cope with a new diagnosis.
3.  No outside groups or organizations are allowed to post to this listserve for the purpose of advertising or solicitation.
4.  CCF members will remain anonymous unless they choose to post a message. When posting a message, your return email address will be revealed to the group.
5.  Any email sent to the group should be signed and include, as a minimum, the name of the person sending the email and their relationship to the child with cardiomyopathy. It would also be helpful to indicate the age of the affected child and type of cardiomyopathy.
6.  Posters should exercise common courtesy when using this forum and be respectful of other member's opinions and privacy. In addition, please refrain from discussing topics of a sensitive and personal nature (e.g. religion, politics).
7.  Please avoid offering individual medical advice since every child's situation is different. As always, it is best to seek the advice of your child's physician on any matters concerning diagnosis and treatment.
8.  If you have had a negative experience with a physician, hospital or company, please refrain from criticizing the person or organization on the listserve.
9.  Email attachments (such as files or photos) should not be sent through the listserve.
10. Questions about operating the listserve or unsubscribing should be sent directly to the list administrator and not to the entire list serve.
11. CCF assumes no responsibility for the content or use of the CCF Forum, or the accuracy or completeness of the information provided by members on the listserve. Please double check any information you receive, and remember that what is communicated is not a substitute for medical or legal advice by experts.