Pierre Robin Network

Pierre Robin Network was formed in May of 1999 by the mother of a son with PRS. Our organization is made up of parents, relatives, caregivers, adults with PRS and professionals who have an interest in PRS.

Our purpose is to network families and individuals with PRS and provide information to anyone who has an interest. Parents and caregivers do not need to feel alone, having a child with PRS can be overwhelming. There are many issues associated with PRS, which are unique to PRS. We do not give medical advice, we leave those issues up to you and your child's doctors.

Pierre Robin Sequence (PRS) is the name given to a combination of birth defects which usually include a small lower jaw, cleft palate and a tendency for the tongue to "ball up" in the back of the mouth. Many of these children have breathing and feeding problems early in their lives. Each child can be affected differently and will react different to different situations.

We are here, as parents to educate, listen and help. Networking can help you accept the condition, learn about it, make your life and your child's life more comfortable. Our information comes from a variety of sources, but mostly our own experiences.

● Are you the parent of a child with PRS feeling alone or overwhelmed?

● Are the relative of a child with PRS who wants to learn more so you can help your family?

● Are you a medical professional seeking others experiences to help your patients with PRS?

● Are you a student looking for information to enhance your education and training?

If you answered yes to any of these, you came to the right place. Our network can provide support, parenting tips and information about PRS. Feel free to join our email group by subscribing below

Subscribe to pierrerobin

Powered by health.groups.yahoo.com


You may also post on our electronic message board which is found here