LivingWithTrisomy13.org Message Boards - Would you like to visit with the families who
have shared their stories on this site? You can email them privately or
request access to this sites message board. If you plan on carrying your
child to term, I highly recommend you join a message board of experienced
trisomy parents. Off this site we have a Prenatal, Living General Topic
message board and a Treasured Memories message board providing Grief
Be Not Afraid is an online
outreach to parents who have received a poor or difficult prenatal
diagnosis. The family stories, articles, and links within this site are
presented as a resource for those who may have been asked to choose between
terminating a pregnancy or continuing on despite the diagnosis. The families
faced the same decision and chose not to terminate. By sharing our
experiences, we hope to offer encouragement to those who may be afraid to
continue on. This site also provides - a message board and resources
BeNot Afraid message board community
Facebook Social Media Support Resources
Trisomy 13 – Patau Syndrome NEWS
Faces of Trisomy – A Collection of many Trisomy Children
The Trisomy 18/13 Journey
SOFT Support Organization for Trisomy
Trisomy 13 – Wikipedia and Related Posts
Trisomy 18 – Wikipedia and Related Posts
For parents who
have lost a child: The
MISS Foundation offers support for parents
who have lost a child under any circumstance. The online forums help parents
support each other in all areas of their lives – we walk with you in your
grief. There are many different forums to choose from…Select forums to
For parents who
have received a Fatal Diagnosis in the Perinatal Period: The
MISS Foundation offers support for parents
who have received a Fatal Diagnosis during their pregnancy through The Fatal
Diagnosis During the Perinatal Period Forum…It is a safe place for families
to discuss questions, concerns, feelings, and anxiety about fatal
anomalies…No judgments, just sharing and support…Select forums to register.
For parents with
children and young adults who are terminally ill: The
Miss Foundation offers support for parents
and families of terminally ill children and young adults in the Pediatric
Hospice Support Forum...A place to share your fears, anxiety and sorrow…
Select forums to register.
Rose’s mother Karen is Moderator of this
YaHoo Group Trisomy 18 13 and related - For families and friends of trisomy
This is a place you can talk all you want about your children and the
challenges you are facing with them, or the heartaches you are feeling
Trisomy Medical list -
is support list for many
variations of trisomy sharing common medical issues
YaHoo Message boards owned and moderated by
Bennett-Chadlen’s mother, Melissa Roy
Support Group for Balanced Translocations - Chromosome Deletion
Outreach, Inc. (CDO) is a non-profit organization providing support &
information to families affected by any rare chromosome disorder. Membership
in CDO and the CDO LISTSERV is FREE! But you must first register at
www.chromodisorder.org CDO Member families receive listserv access,
networking, periodic newsletter, articles and more.
SPANISH Support site for Trisomy 18 & 13 Para Padres
ENGLISH translation of Spanish support site for Trisomy 18 & 13 Para
Padres (For Fathers)
NORD - National
Organization for Rare Disorders
Genetic and Rare Conditions Site- Medical Genetics, University of Kansas
Medical Center - Lay advocacy and support groups for Chromosomal
Conditions, information on genetic conditions /birth defects for
professionals, educators, and individuals, National and International
National Parent to Parent Network MUMS' main purpose is to provide
support to parents in the form of a networking system that matches them with
other parents whose children have the same or similar condition.
A collection of AUDIO interviews with families touched by trisomy 18,
trisomy 13, and other rare trisomy disorders.
Trisomy 13 & 18
Funding Research, Promoting Education, Raising Awareness and Changing
- Moms and Dads in search of needed support. Madison's Foundation is
dedicated to improving the quality and quantity of information available
to parents of children with rare, life-threatening diseases, and to
facilitating effective communication amongst parents, physicians and
- In his loving memory, the Michael Gerard Puharic Memorial Fund, Inc.
has been established to support and give comfort to parents carrying,
delivering and caring for seriously ill newborns.
Brave Kids -
Help for Children with Chronic, Life - Threatening Illnesses and
Medical Information and Resources for Children with Chronic,
Life-Threatening Illnesses and Disabilities - Find medical information and
resources for children with special needs, chronic illness and disabilities
such as: autism, cancer, cerebral palsy, ADHD, ADD and more here at Brave
Kids. Brave Kids provides parents and children with information on health
services, financial assistance, support groups, child care, dental
assistance, camps, transportation and physical therapy to name a few.
Dental CARE Financial Assistance...Grottoes
of North America Humanitarian Foundation Provides financial assistance
to the families of Special Needs Children for their dental care. There is no
qualification process other than that the child is under 18 and has a
condition which qualifies them for our program. If the family has insurance
we will even pay the out-of-pocket co-pay.
Hope For Kids Trisomy 13 children can have cleft-lip and palate
associated with the diagnosis. This Cranial Facial Surgeon and his site will
give you Hope for your child. (Click on the cranial facial to see the
changes from cleft lip to repaired.)
Genetic Alliance increases the capacity of genetic advocacy groups to
achieve their missions and leverages the voices of millions of individuals
and families living with genetic conditions.
This website is committed to genetics education awareness. To obtain a
better understanding about genetic revolution, we provide the history of
The Opposite disorder of Trisomy 13 (missing a portion or whole chromosome)
The World Wide
Chromosome Deletion 13q Support Network This
website was designed as a resource and networking opportunity to put
families in touch with each other that have children or loved one's with the
rare genetic disorder of Chromosome Deletion 13. Whether your loved one is
missing a portion of deletion 13 or the whole chromosome - we want to hear
Outreach, Inc is a non-profit organization, founded, supported, and run
by parents just like you. Our children are affected by a wide range of
chromosome disorders, including deletions, duplications, trisomies,
inversions, translocations, and rings.
Sometimes these disorders are so unusual that doctors tell us, "You're the
only one out there." Please read our Introduction to Chromosomes for more
about these rare disorders..
Unique Rare Chromosome
Disorder Support Group is a source of information, mutual support and
self-help to families of children with any rare chromosome disorders
including deletions, trisomy, balanced translocations, unbalanced
translocations, rings, inversions, duplications, tetrasomy, monosomy,
triploidy, isodicentric, marker, mosaic, sex chromosome aneuploidy (e.g.
47,XXX 47,XYY 48,XXXX 49,XXXXY etc.) etc. Membership of Unique is free.
Family Village a
global community that integrates information, resources, and communication
opportunities on the Internet for persons with cognitive and other
disabilities, for their families, and for those that provide them services
Emedicine - INSTANT ACCESS
TO THE MINDS OF MEDICINE
Support in the Philippines -
foundation we set up in honor of our baby boy, Gabriel. Gabriel had a rare
chromosomal disorder called trisomy 13. He lived for 9 months.
Talk about it!
Hollywood Promises To talk about it! Epilepsy, Seizures... Quality of Life.