Children's Disability List of Support Groups and Listservs
The Children's Disability List of Support Groups and Listservs © is a annotated directory of internet support groups for families of children with disabilities and special needs. Each disability mailing list has been validated for usefulness and family orientation. Children's disability discussion forums, support groups, and listservs for parents of special needs children are grouped by general content in this directory. 1997-2008.
ADD/ADHD Support GroupsGo to the Directory of ADD/ADHD Support Groups and Listservs
Adoption Support GroupsGo to the Directory of Adoption Support Groups and Listservs
Allergy & Asthma Support Groups
Autism / Aspergers / PDD Support GroupsBrain Injury Support Groups - see Neurological / Brain Impacts
Mailing list for families who have children born with cleft palate or cleft lip defects.
To Join: Send the message, SUBSCRIBE CLEFT_TALK2 Your Real Name to firstname.lastname@example.org
Listowner: Joanne Green
For parents of children born with cleft lip and/or cleft palate. Our list is open to all to freely express their feelings, get support and to learn in a positive environment.
To Join: Send a blank message to email@example.com or join online.
Link (Fetal Alcohol Syndrome)
Mailing list for people interested in Fetal Alcohol Syndrome/Fetal Alcohol Effects.
To Join: Send the message, SUBSCRIBE FASLINK to firstname.lastname@example.org
Listmoderator: Bruce Ritchie
Active mailing list for families of children with Congenital Heart Defects (CHD) and Childhood Onset Heart Disease. (The Children's Health Information Network has a number of other pediatric heart lists. A complete set of their lists is at http://tchin.org/support/index.htm )
To Join: Send a blank message to: email@example.com join online.
Listowner: Mona Barmash
CHD Families (Congenital Heart Defects)
A support group for resources and support for parents, grandparents and siblings of children born with Congenital Heart Defects. Affliated with Families Raising Awareness of CHD, One Heart At A Time.
To Join: Send blank email to CHDFamiliesfirstname.lastname@example.org or join online.
Down Syn (Down Syndrome)
A well established and active list for discussion of Downs Syndrome. Members include parents, siblings, other relatives, friends, therapists, physicians, and of course people with Down Syndrome.
To Join: Send an email with the message, SUBSCRIBE DOWN-SYN Your Real Name to LISTSERV@LISTSERV.NODAK.EDU or subscribe online
Listowner: Bill McGarry
DownSyn Forum (Down
Syndrome for New Parents)
An active open, moderated web based board for parents of children with Down Syndrome. Topics include prayer requests, education, PDD/autism, open discussion and more. To join, visit the DownSyn forum at http://www.downsyn.com/phpbb2/index.php
Ups N Downs (Families Involved
with Down Syndrome)
An international support group for family members of people with Down syndrome, in existence since 1995. The focus is on the family and not just the family member with Down syndrome.
To Join: Send a blank email to UpsNDownsemail@example.com or subscribe online.
Support and information for those whose child is facing heart surgery, who has had surgery, those whose condition is inoperable, and those families who are bereaved. This online community is linked to Down's Heart Group, a UK charity which provides support and information related to the cardiac issues associated with Down's Syndrome.
To Join: Send a blank email to Downs-Heartfirstname.lastname@example.org or subscribe online.
Mosaic DS ·
Mosaic Down Syndrome
A support list for parents whose babies/children/adult children have been diagnosed with Mosaic Down Syndrome.
To Join: Send a blank email to MosaicDSemail@example.com or subscribe online.
A list for parents of children with Down Syndrome to brag, talk about concerns, medical problems, schooling,therapy, and so on. A good group for parents of young chidren but apparenlty unmoderated.
To Join: Send a blank email to firstname.lastname@example.org or subscribe online.
Homeschooling and Down Syndrome
Discussion list for families who are homeschooling or want to homeschool their child with Down Syndrome.
To Join: Send a blank message to email@example.com or subscribe online.
DS-Autism (Down Syndrome & Autistic Spectrum)
DS-Autism is a discussion list for families, parents, and professionals interested in the dual diagnosis Down Syndrome and Autism. The list is a service of the Down Syndrome & Autism Internet Information Center and Creating Solutions.
To Join: Send a blank email to firstname.lastname@example.org or subscribe online.
Listowners: Joan Guthrie Medlen, Donna Duffey, and Mary Beth Pilewski Paul.
Feeding Support Groups
Cytomegalovirus (CMV) is a herpes type virus with complications ranging from unnoticed to devastating, especially dangerous to a developing fetus. To list a few: death, miscarriage, intracranial calcification, Cerebral Palsy, seizure disorder, deafness, visual impairment, profound delays and mental retardation, microcephally, mal-absorption difficulties, feeding difficulties, CMV retinitis.
To Join: Write to email@example.com and put CMV in the body of the post or join online.
Listowner: Tina Konczol
GB Strep (Group B Streptococcus)
Group B Streptococcus (GBS) is a bacteria that is found in the in the vagina and/or lower intestine of 10-35% of all healthy, adult women. Approximately 8,000 babies in the U.S. contract serious GBS disease each year. Up to 20% of the babies who survive GBS-related meningitis may develop serious handicaps, including hearing or vision loss, varying degrees of physical and learning disabilities, and cerebral palsy.
To Join: Send blank email to firstname.lastname@example.org or join online.
A mailing list where information and support regarding hepatitis B can be shared in an atmosphere of compassion and friendship. List members include those who are Hepatitis B sufferers, their family or friends, or any other interested parties.
To Join: Any message sent to HEPATITIS-B-ON@MAIL-LIST.COM will start the subscription process.
Listowners: Steve Bingham, Sheree Martin
General Children's Disabilities (Special Needs Parenting)
Families of Angelman Syndrome
A place for families to talk about Angelman Syndrome and give each other support on raising a child with Angelman Syndrome.
To Join: Send a blank email to email@example.com or join online.
Recessive Polycystic Kidney Disease)
This list is for anyone who's lives have been affected by ARPKD Autosomal Recessive Polycystic Kidney Disease. Autosomal recessive polycystic kidney disease (ARPKD) is the most common heritable cystic renal disease occurring in infancy and childhood.
To Join: Send a blank email to ARPKDfirstname.lastname@example.org or join online.
L (Cystic Fibrosis List)
Exchange of information and support specific to cystic fibrosis. Members include people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others.
To Join: Send an email with the message SUBSCRIBE CYSTIC-L Your Real Name to LISTSERV@PEACH.EASE.LSOFT.COM or subscribe online.
Ped PID (Pediatric Primary Immune Deficiency)
This list brings together parents and caregivers of children affected by a Primary Immune Deficiency.
To Join: Send a blank email to PedPIDemail@example.com or subscribe online.
This list is for parents and caregivers who have children with pituitary disorders. Discussion may also include disorders of the endocrine system, hypoglycemia, growth hormones and steriods.
To Join: Send a blank email to firstname.lastname@example.org or join online.
· Pierre Robin Network
Pierre Robin Network is comprised of parents, caregivers, family members, medical professionals and adults with Pierre Robin Syndrome.
To Join: Send a blank email to email@example.com or join online.
Rare Genetic Disorders (Triple X or Trisomy X Syndrome)
This is a group for parents, parents-to-be, other family members, and the women themselves to share regarding the diagnosis of an extra X.
To Join: Send a blank email to firstname.lastname@example.org or join online.
Discussion of medical issues related to Trisomy chromosmal disorders. The Trisomy Online also provides 5 different lists for Trisomy 18, Trisomy 13 and other related chromosomal disorders. Visit their website to see each topic.
To Join: Send an e-mail to Tri-Medemail@example.com with the word SUBSCRIBE in the subject line or join online.
Listowner: Karen Schuler
For parents and caregivers of children with congenital muscular torticollis (CMT) to share information and ideas.
To Join: Send a blank email to Torticolliskidsfirstname.lastname@example.org or join online.
TS Parents-3 (Turner Syndrome Parents)
A discussion group for parents of children with Turner Syndrome, a genetic disorder that affects about one in every 3000 girls.
To Join: Send a blank email to TSParentsemail@example.com to or join online.