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At the Peña Colorectal Center at Cincinnati Children’s, we are committed to providing the finest diagnosis, treatment and follow-up for our patients. We understand the 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 to get support and advice from others from around the world who share your situation.
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 Children’s.
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 that are committed to the improvement of the quality of life of people who have, or will have, an intestinal or urinary diversion.
The VACTERL Network was established to provide support to families who have a child born with VACTERL / VATER or adults with VACTERL.
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.
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.
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
In Hirschsprung’s Disease − Solving the Puzzle, a book available for online purchase, author Nicole Murphy presents an easy to read manual geared toward parents and caregivers of children with Hirschsprung’s disease to provide a better understanding of this rare disorder. A section of the book focuses on the Peña Colorectal Center’s Bowel Management Program at Cincinnati Children’s.
Hirschsprung’s Genetic Study
Hirschsprung’s 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.
Malone / Appendicostomy : Notes written by parents for parents
The Information for Malone / MACE/ Appendicostomy (pdf) was produced following several discussions on online support groups about Antegrade Colonic Enemas and collated so that parents considering this procedure for their child can make a decision about whether this is something that may assist with the social continence of their child.
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.
YRC 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 ages 11 to 17 with bowel or bladder dysfunction.
AH-Potilaat Yhdystis: An organization in Finland providing information about anorectal malformations.
AIMAR: A support group for parents in Italy of children with anorectal malformations and other colorectal conditions.
Ano Rektal Malformasyon: An organization in Turkey providing information about anorectal malformations.
APMAR: An organization in Portugal providing information about anorectal malformations.
Associazione Italiana per le Malformazioni Anorettali / AIMAR: An anorectal malformation organization in Italy.
Australian Bowel Group for Kids Inc.: Formed in 1996 by parents and pediatric professionals, this support group is a network for parents who have a child with disordered gastrointestinal motility.
Care My Colostomy: An organization located in India provides A to Z information about anorectal malformations.
Colorectal Parents Philippines: 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: An Israel-based organization providing information about anorectal malformations.
Norsk Forening for Analatresi: An organization in Norway providing information about anorectal malformations.
NZ-Australia ACE and BOWEL Network: 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 or neuronal intestinal dysplasia.
Pediatric Continence Association of Australia (PCAA): An Australia-based organization providing information on all aspects of bowel and bladder conditions in children and young people.
SoMA e.V.: An organization in Germany providing information about anorectal malformations, rectal atresia, anal atresia and VACTERL syndrome.
TEF VATER International Support Group: Offers a supportive online network for parents of children born with VATER Syndrome.
Vereniging Anusatresie: An organization in Holland providing information about anorectal malformations.
NOTE: Interpreter services for our patients are provided by Affordable Language Services.
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