Informational Website

When using the web to find information it is important to know the source.  We do not endorse any of these websites as quality of information may change. 

These are a few websites that you may find helpful:

www.pedisurg.com
This is the website for the Pediatric Surgery Division here at the University of Texas – Houston Health Science Center.  It contains with medical information about surgeries. New website address in January 2005 will be www.txcleft.com .

www.cleftline.org
This is the website of the American Cleft Plate-Craniofacial Association and the Cleft Palate Foundation.  It is an international group that has established standards that Team follow.   This is the source of many of the educational resources available today.

www.cleftdvocate.org
Has a pop-up window to register for “Family-to-Family Connection”.  This is a chat room/bulletin board site.

www.widesmiles.org
This is a website that has lots of parent input and practical information.  There is a parent chat line, letters and pictures. 

www.modimes.org
This is the March of Dimes website.  This is a source of information about many birth defects and conditions that effect children.

www.aboutfaceusa.org
About Face USA has a meet more information on craniofacial differences.  It provides peer support and linkages.

www.faceit.org
Let’s Face It! provides information, family support programs and links. 

www.dontlaugh.org
A website that you may want to share with your child’s teacher or school.

www.cappskids.org
Craniosynostosis and Positional Plagiocephaly Support Provides information and support.  CAPPS has just launched it's own Positional Plagiocephaly Support group at Yahoo.

www.caphis.mlanet.org/directory
Consumer Medical Information Consumer Section of the Medical Library Association. There are 31  different medical sites to search in.

www.faces-cranio.org
FACES - The National Craniofacial Association People with craniofacial deformities resulting from birth defects, injuries, or disease may apply to this nonprofit organization for financial assistance for non-medical costs. newsletter, information, booklets, etc.

  Lynne Mayfield, Director
  Box 11082, Chattanooga, TN 37401
  (423) 266-1632 or (800) 332-2373
  E-mail: faces@mindspring.com or faces@faces-cranio.org

www.health.gov/nhic
National Health Information Center Vast, in-depth, federally funded medical information network.

www.rarediseases.org
National Organization for Rare Disorders (NORD) will do individual research for you. They publish a comprehensive 1152-page paperback book that lists all the networks for specific conditions.

   P.O. Box 1968, Danbury, CT 06813-1968
   (203) 744-0100 or (800) 999-6673
   E-mail: orphan@NORD-RDB.com

www.selfhelpgroups.org
American Self-Help Clearinghouse A keyword-searchable database of over 1000 national and international self-help support groups for addictions, bereavement, health, mental health, disabilities, abuse, parenting, caregiver concerns and other stressful life situations.

www.pierrerobin.org
Pierre Robin Network Support and education for individuals, parents, caregivers and professionals dealing with Pierre Robin Syndrome or sequence. Literature, newsletter, information, advocacy. Online email group and bulletin board. Outreach committee comprised of families available worldwide to correspond via mail, phone, in-person or email.

www.birthdefects.org
Birth Defects Research for Children. Provide comprehensive fact sheets about birth defects, as well as other information. If your child was born with a birth defect, provide parent matching opportunities and information resources, including books and links.

www.treachercollinsfnd.org
The Treacher Collins Foundation is an organization of families, individuals, and professionals who are interested in developing and sharing knowledge and experience about Treacher Collins syndrome and related conditions.