Private Facebook Group Information and Guidelines For Families

CCHS Network maintains a private CCHS Facebook page for patient/family discussions.

You must be a member of the CCHS Network to access the private Facebook page.  Please go to CCHS Network US Registration if US family or CCHS Network International Registration if International family to register with the CCHS Network.  A confirmed CCHS diagnosis is required for registration.


To create and communicate content that educates, inspires, informs and empowers CCHS patients/families, and to serve as a platform to share experiences, post questions and safely discuss issues in CCHS. 

Core Values

These are the guiding principles that govern the behavior and action of this group:
Honesty, Respectfulness, Open-mindedness, Optimism, Compassion, Cooperation, Knowledge, Togetherness, and Fairness. 

Membership Rules

  1. This is a closed group. Membership is open to individuals and families registered with the CCHS Family Network. Please go to to register with the Network. Once registered you will be invited to join this forum.
  2. Membership is not available to non-family health care providers.
  3. Physicians and professionals from their services may not be members
  4. Once you are added to this group, you will have the option of adding other family members who play a significant role in the care of your child, or are a support to the CCHS patient. Please be aware, however, that admins must approve all additions to the group.
  5. Once a family or support member has been admitted upon request by patient or primary care giver, they can be removed at any time by patient or primary care giver contacting the site Admins and requesting removal.
  6. The Admins will be ultimate arbitrators on how these rules apply to membership in special cases. 

Etiquette rules

  1. Civility in posts.
  2. No obscene language.
  3. No derogatory language.
  4. No maliciousness or spitefulness.
  5. Members will not attack, harass or coerce other members.
  6. No solicitation for funds for private use.
  7. Political harassment will not be tolerated.
  8. The site Admins will be the ultimate arbitrators of post decorum and will remove post deemed offensive. 

General rules

  1. Blocking members or admins is not allowed.
  2. Blocking an admin or other group member is grounds for immediate removal from site.
  3. Members with 3 etiquette violations will be suspended from the site for 1 month; a new etiquette violation thereafter will result in a 3 month suspension; a third consecutive breach of the rules of civility will result in long-term removal from group.
  4. Although not commonplace, a concern for the CCHS community in totality, may force Facebook Admins to block a member who has multiple serious and egregious violations from the CCHS Network Facebook page.  Blocking of a member following multiple etiquette abuses will be at the discretion of the Facebook Admins and CCHS Network leadership.
  5. After a minimum period of 1 year a member that has been removed and/or blocked due to serious and egregious propriety offenses can request re-admittance to the site by directly contacting a Facebook Admin requesting re-admittance.
  6. Open discussion with respect for others’ views is acceptable; preaching or peddling is not acceptable.
  7. While it is not the purpose of this group, its administrators or the CCHS Family Network to give specific medical advice to/for any patient, the nature of this discussion board on CCHS is to encourage patients and families to share ideas, suggestions and pass along experiences with issues under discussion. Patients’ treatment and care regime are the responsibility of physicians in consultation with patients or parents and care providers. 

Decision Making

  1. Rules and guidelines for usage of this site have been established, reviewed, and approved by the CCHS Network Executive and Advisory Boards.   Policy is reviewed yearly and  should policy need adjusted, decisions about how to proceed will be made by majority vote of CCHS Network Boards, with guidance from Facebook admins..
  2. All changes in policy/guidelines will be published in an open forum 3 days before they are enacted on. 

Administration Policy

  1. Admin positions are by invitation only.
  2. Admins will serve for a period of 3 years, with a 2 year extension, contingent upon willingness and agreement of other Admins and Executive Board.
  3. It is our aim that Admin membership will be balanced regionally and by age of CCHS patient, to represent the diversity of the CCHS population.
  4. Current Admins and CCHS Board members may nominate candidates for admin positions as they become available. 

CCHS Network Facebook Forum User Agreement

By registering with the CCHS Network and joining the CCHS Network private Facebook page you agree to these terms of usage.