Helpful Resources
At the Colorectal Center for Children at Cincinnati Children's Hospital Medical Center, we are committed to providing the finest diagnosis, treatment and follow-up for our patients. We understand a diagnosis of an anorectal malformation or other colorectal disorder is a great source of stress for our patients and their families. In everything we do, we strive to make this trying experience as easy as possible. We suggest the following support groups and networks to help you more fully understand your child's condition and get support and advice from others from around the world who share your situation.
Support Groups
Hirschsprung's and Motility Disorders Support Network / HMDSN
The Hirschsprung's and Motility Disorders Support Network / HMDSN is an online network of people and families with children who suffer from Hirschsprung's Disease and other gastrointestinal motility disorders. HMDSN also offers a group specifically for adults with motility disorders.
IA (Imperforate Anus) Parents Support Group
IA (Imperforate Anus) Parents Support Group Offers information, support and a host of resources, including monthly online chats with medical specialists specifically for parents of children born with imperforate anus, Hirschsprung's Disease and other types of anorectal malformations.
My Family On Call - Jewish Federation of Cincinnati
The Jewish Federation of Cincinnati’s myFamily-on-call, an initiative of the Federation's Women's Philanthropy Council, is a volunteer program that helps give Jewish families temporary support while in Cincinnati as their children undergo treatments at Cincinnati’s Children’s Hospital.
Parents Helping Parents
Parents Helping Parents helps to meet children's special needs.
Partnership for Parents
Partnership for Parents is a support network for parents of children with serious illnesses.
Pull Through Network
The Pull Through Network offers a forum of exchange of information among parents with common concerns in colorectal problems.
United Ostomy Associations of America
United Ostomy Associations of America (UOAA) is an association of affiliated, nonprofit, support groups who are committed to the improvement of the quality of life of people who have, or will have, an intestinal or urinary diversion.
VACTERL Network
The VACTERL Network was established to provide support to families who have a child born with VACTERL / VATER or adults with VACTERL.
VATER Connection
The VATER Connection connects families to families and organizations involved in the VATER Syndrome.
Yahoo! Groups Vater Association
Yahoo! Groups Vater Association is a support group for people in the Vater Association Community.
More Information
Birth Defects Research Center for Children
Birth Defects Research Center for Children is where parents can access free birth defect information, parent networking resources and birth defect research through the National Birth Defect Registry.
Enema Equipment
Cleanema is a portable device that allows its users to apply enemas anywhere without another person’s assistance.
Hirschsprung's Disease - Solving the Puzzle. An Informational Guide for Parents and Medical Professionals
Hirschsprung's Disease - Solving the Puzzle, is a book that is available for online purchase, author Nicole Murphy presents an easy to read manual geared towards parents and caregivers of children with Hirschsprung's Disease in order to provide a better understanding of this rare disorder. A section of the book focuses on the Colorectal Center's Bowel Management Program at Cincinnati Children's Hospital Medical Center.
Hirschsprung's Genetic Study
Hirschsprung Genetic Study provides parents with access to information on what we know about the genetic basis of Hirschsprung's disease, and describes the genetic studies taking place in the John Hopkins laboratory.
Wear It on the Outside
Wear It on the Outside is a documentary film giving identity to the emotional effects created by congenital anorectal and colorectal malformations.
Summer Camps
Youth Rally
The Youth Rally is a summer camp, organized and run by the Youth Rally Committee (YRC), providing a non-threatening environment for adolescents between the ages of 11 and 17 with bowel or bladder dysfunction.
International Organizations
AH-Potilaat Yhdystis
AH-Potilaat Yhdystis organization in Finland providing information about anorectal malformations.
Ano Rektal Malformasyon
Ano Rektal Malformasyon organization in Turkey providing information about anorectal malformations.
APMAR
APMAR Organization in Portugal providing information about anorectal malformations.
Associazione Italiana per le Malformazioni Anorettali / AIMAR
Associazione Italiana per le Malformazioni Anorettali/ AIMAR is an anorectal malformation organization in Italy.
Bowel Group for Kids Inc.
The Australian Bowel Group for Kids Inc. was formed in 1996 by parents and pediatric professionals. This support group is network available to parents who have a child with disordered gastrointestinal motility.
Care My Colostomy
Care My Colostomy Organization located in India provides A to Z information about anorectal malformations.
Colorectal Parents Philippines
Colorectal Parents Philippines is an international, online support group for parents and families of children in the Philippines with Hirschsprung's Disease, imperforate anus and other anorectal malformations.
Itmut
Itmut is an Israel-based organization providing information about anorectal malformations.
Norsk Forening for Analatresi
Norsk Forening for Analatresi is an organization in Norway providing information about anorectal malformations.
NZ-Australia ACE and BOWEL Network
NZ-Australia ACE and BOWEL Network is a support group in New Zealand and Australia for parents with children who have a variety of congenital or chronic bowel conditions such as Hirschsprung's Disease, anorectal malformations, Neuronal Intestinal Dysplasia or are still undiagnosed.
Pediatric Continence Association of Australia (PCAA)
Pediatric Continence Association of Australia (PCAA) is an Australia-based organization providing information on all aspects of bowel and bladder conditions in children and young people.
SoMA e.V.
SoMA e.V. is an organization in Germany providing information about anorectal malformations, rectal atresia, anal atresia and VACTERL syndrome.
TEF VATER International Support Group
The TEF VATER International Support Group offers a supportive online network for parents of children born with VATER Syndrome.
Vereniging Anusatresie
Vereniging Anusatresie is an organization in Holland providing information about anorectal malformations.
Contact the Colorectal Center at Cincinnati Children's
For more information or to request an appointment for the Colorectal Center at Cincinnati Children's Hospital Medical Center, please contact us.
