Family Networking

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Many families that have a member with a craniofacial condition feel isolated and alone. With Family Networking and social networking, family members are connected with others in similar situations in order to

• share emotional support,

• discuss problems, and

• identify resources.

Being able to communicate with other parents, siblings, or patients can help you feel part of a larger community with others who are ready to help them through rough times, work through decisions and just “be there” for one another.

Getting networked is just a phone call or key stroke away. Click on registration or call 800.535.3643 and ask for Annie Reeves. CCA maintains a list of kids, parents, grandparents, siblings, and adults interested in communicating with others. We will match you as closely as we can to someone having similar experiences.

CCA respects your right to privacy. Your information will never be sold or shared without your consent.

Frequently Asked Questions

A. Family networking is a program in which a family member parent/child/grandparent/sibling is introduced to another CCA family who is going through similar experiences.

A. CCA keeps a list of families who are interested in communicating with others. CCA will match you as closely as possible to another family whose child (or adult) has the same syndrome and take into account any requests you may also have. We try to connect you with someone based on your geographic region, age demographic, syndrome, and current needs (i.e., treatments, social situations, etc.).

A. If possible CCA will connect you with someone in your geographic region! We have a large network of families. If not we will find someone we think you will relate to depending on your needs. With social media and video chatting options, you can connect in virtual and traditional ways.

Each September, families host regional Craniofacial Acceptance Month events and this is another way to find families close to you.

A. Most families email, call, and text back and forth. Many have gotten close enough that they set up events, playdates, and gatherings together. Some even vacation together!

A. Yes, we can connect you with a single parent.

A. We have several students who volunteer in our Speakers’ Bureau program, and if you like, we will reach out to these exceptional young people for networking purposes.

A. There is not an age range; however, they do need to be able to communicate with one another. We always advise parents supervise their children’s activities, including networking with other CCA Families.

A. Click on the registration button above, fill out the registration form, and indicate you want to be networked. CCA’s Program Director, Annie Reeves, will contact you for more information, or you may e-mail her directly at  [email protected].

Q. What’s the best way to meet families with craniofacial syndromes?

A. While our networking program offers personal connections, we highly recommend you attend one of our Annual Family Retreats in your first few years. The connections and friendships you make will be immensely impactful in the years to come. At the Retreat, our motto is “We are family,” and we believe you will find a huge extended family if you join us!