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 Groups
Go to the Directory of ADD/ADHD Support Groups and ListservsAdoption Support Groups
Go to the Directory of Adoption Support Groups and ListservsAllergy & Asthma Support Groups
Go to the Directory of Allergy and Asthma Support Groups
Autism / Aspergers / PDD Support Groups
Go to the Directory of Autism / Aspergers / PDD Support Groups
Brain Injury Support Groups - see Neurological / Brain ImpactsBirth Defects / Congenital Support Groups
Cleft
TAlk
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 majordomo@bmtmicro.com
Listowner: Joanne Green
Cleft Chat
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 cleftchat-subscribe@yahoogroups.com
or join online.
FAS
Link (Fetal Alcohol Syndrome)
Mailing list for people interested in Fetal Alcohol Syndrome/Fetal Alcohol Effects.
To Join: Send the message, SUBSCRIBE FASLINK to majordomo@listserv.rivernet.net
Listmoderator: Bruce Ritchie
PD Heart
(Pediatic Heart)
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: pdheart-on@tchin.org.or 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 CHDFamilies-subscribe@yahoogroups.com
or join online.
Down Syndrome Groups
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 UpsNDowns-subscribe@yahoogroups.com or subscribe online.
Downs Heart
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-Heart-subscribe@yahoogroups.com 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 MosaicDS-subscribe@yahoogroups.com or subscribe online.
Down Syndrome
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 down_syndrome-subscribe@yahoogroups.com 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 homeschoolinganddownsyndrome-subscribe@yahoogroups.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 ds-autism-subscribe@yahoogroups.com or subscribe online.
Listowners: Joan Guthrie Medlen, Donna Duffey, and Mary Beth Pilewski Paul.
Feeding Support Groups
Go to the Directory of Feeding Support Groups and Listservs
Infectious Diseases Support Groups
CMV (Cytomegalovirus)
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 listserv@listserv.syr.edu
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 gbstrep-subscribe@yahoogroups.com
or join online.
Hepatitis-B
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
P Kids-List
The primary mailing list for parents of kids with chronic viral infectious diseases.
To Join: Send the message SUBSCRIBE to PKIDS-LIST-REQUEST@MAIL-LIST.COM
or join online.
General Children's Disabilities (Special Needs Parenting)
Go to the Directory of Parenting Children with Special Needs Support Groups and Listservs
Genetic Support Groups
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 familiesofangelmansyndrome-subscribe@yahoogroups.com or join online.
ARPKD (Autosomal
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 ARPKD-subscribe@yahoogroups.com
or join online.
Cystic
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 PedPID-subscribe@yahoogroups.com
or subscribe online.
Panhypopituitarism
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 panhypopituitarism-subscribe@yahoogroups.com
or join online.
Pierrerobin
· 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
pierrerobin-subscribe@yahoogroups.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 raregeneticdisorders-subscribe@yahoogroups.com or join online.
Tri-Med
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-Med-request@freelists.org
with the word SUBSCRIBE in the subject line or join online.
Listowner: Karen Schuler
Torticollis Kids
For parents and caregivers of children with congenital muscular torticollis
(CMT) to share information and ideas.
To Join: Send a blank email to Torticolliskids-subscribe@yahoogroups.com 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 TSParents-3-subscribe@yahoogroups.com to or join online.
Go to Page 2 of Children's Disability Groups and Listservs.