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Support Groups for Parents

A collection of resources for parents of children with chronic illnesses, including cystic fibrosis, congenital heart disease, and rare disorders, so that they can get the information and support they need to care for their children.
  1. Parents With Cancer

Clubs for Parents of Multiples
Clubs for families with multiples are an invaluable resource for parents of twins, triplets or more. Connect with a local club in your area for support, advice, friendship and equipment swapping.

Aicardi Syndrome Foundation
Support group for parents of children with Aicardi syndrome.

About Face International
Information about children with facial differences, including those with microtia, Pierre Robin Syndrome, Crouzon Syndrome, Craniosynostosis and Craniometaphyseal Dysplasia.

Al-Anon/Alateen for families and friends of alcoholics
The Al-Anon Family Groups offers support for families, teenagers and friends of alcoholics. Includes a list of meetings and a description of the twelve steps.

Children's Liver Association for Support Services
CLASS provides support for parents of children with liver disease and transplantation. With a library of information about childhood liver disease, liver transplants, medications, personal experiences and a discussion forum.

Cornelia de Lange Syndrome Online Support Group
Connect with another family in your area that has a child with Cornelia de Lange Syndrome through the Cornelia de Lange Syndrome Foundation.

Epilepsy Support Groups and Organizations
A world-wide collection of support groups and organizations for parents of children with epilepsy.

Hershey Hearts
Support group for parents of children with congenital heart disease,

Hydrocephalus: HYCEPH-L email discussion group
An unmoderated email discussion list for people with hydrocephalus, their friends and family members, health care professionals and anyone else with an interest in hydrocephalus, so that they can share information and support in dealing with hydrocephalus.

Klinefelter Syndrome Support Groups
Information about living with Klinefelter Syndrome and links to support groups and email lists.

Make A Wish Foundation
The Make A Wish Foundation grants wishes for children with life threatening illnesses. Includes information about wish referral and finding your local chapter.

MUMS - National Parent to Parent Network
Offers support to parents through a national Parent-to-Parent organization for parents with disabilities and chronic health problems.

Parents Without Partners
A support group for single parents, with practicle tips on coping and grieving, communicating with children, child discipline, visitation, never-married parenting situations, legal issues, and social considerations.

Prune Belly Syndrome Network
Information and support for parents of children with Prune Belly Syndrome, which is also called Eagle-Barrett Syndrome. This rare condition causes children (mostly males) to have deficient abdominal muscles, urinary tract abnormalities and undescended testes.

Rare Diseases
Search the National Organization for Rare Disorders organizational database to find support groups for many rare diseases affecting children.

Smiles - a Cleft Lip and Palate Support Group
Information and resources about children with a cleft lip and/or palate, including the advice of otolaryngologists, speech and language development, genetics and what to expect after your repair.

Families of Spinal Muscular Atrophy
Everything you need to know about Spinal Muscular Atrophy, including how to cope with a new diagnosis, plus message boards and information about research and fundraising for families of children with SMA.

Vascular Birthmarks Foundations
Information, support and resources about vascular birthmarks, including hemangiomas, port wine stains and venous malformations. With treatment options and before and after pictures.

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