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
● 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
● 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
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
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You may also post on our electronic message board which is found
Pierre Robin Network
Quincy, IL 62305
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DISCLAIMER: This site and the Pierre Robin Email List server, and the
information contained within them, are designed to be relevant to
parents, adults and professionals interested in PRS. The information
supplied here is not to be used as a diagnostic tool and is not intended
to replace or supplement individual medical consultation. Please take
this information to your child's physician or your physician and discuss
it together. Pierre Robin Network, the author of these pages and the
members of the email list server accept no responsibility for the misuse
of the information contained within this website or within the email
list server messages and files.