Pierre Robin Network

A place to call home, where you are never alone

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Links

We offer this page to enhance your learning experience about PRS and other issues.  We don't specifically endorse any of the organizations featured here, but felt we should let you know they are there.  Feel free to learn more by clicking on them.

Cleft Groups

Cleft Palate Foundation considers their primary purpose "to enhance the quality of life for individuals with congenital facial deformities and their families through education, research support, and facilitation of family-centered care."

Related to PRS

About Face International provides information and emotional support to individuals with facial differences and their families.

About Face USA   is a non-profit international organization dedicated to providing information, emotional support, and educational programs to individuals who have a facial disfigurement, and to their families. 

Their goal is to assist all persons with facial differences to have a positive self-image and self-esteem so that they can participate fully n their communities.

Chromosome Deletion Outreach is a non-profit organization providing information & support for Families and Professionals affected by Chromosome Deletions, Trisomies, Inversions, Translocations and Rings.

International 11;22 Translocation Network is a site for families dealing with Trisomy 11;22 and other related disorders.

Let's Face It USA is a nonprofit network that links people with facial disfigurement and all who care for them to resources that can change their lives.

Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER) is a not for profit group that provides information and support to parents, patients and doctors.

Stickler Involved People a website about Stickler Syndrome, they also have an email list server where you can share information and find support on Stickler Syndrome.

Organizations

Aaron's Tracheostomy Page is a great resource for parents who have kids with trachs.  The resources are wonderful and the site is loaded with information. They also reference a list server you can join for trach related issues and support from other families.

Family Village is a wonderful site filled with information on disabilities and other resources.

Genetic Alliance is a nonprofit tax exempt organization founded in 1986 as a national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions.

Genetic Information and Patient Services, Inc (GAPS)  provides links to easy to understand online definitions, support groups, and information pages for genetic disorders and birth defects.  This group provides a wonderful resource for individuals seeking information on a wide variety of disorders.

Our-Kids is a "Family" of parents, caregivers and others who are working with children with physical and/or mental disabilities and delays.

Barrow Craniofacial Center offers unique expertise in treating children with craniofacial disorders is based on more than 20 years of experience in treating a vast array of simple and complex craniofacial conditions.

Financial and Travel Assistance

Ronald McDonald House offers a place for you to stay while your child is in the hospital and/or recovering.

Children's Miracle Network can help in a variety of ways and offer their assistance through various hospitals.

State Medicaid Links offers links to Medicaid information for all states in the US.

Air lifeline is a national non-profit charitable organization of private pilots who donate their time, skills, aircraft and fuel to fly medical missions.
 

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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.

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