TRISOMY SUPPORT - PATAU SYNDROME SUPPORT  General Support, Information & Links

The 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 Support.

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 NEW BeNotAfraid.net BLOG

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 register.
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 children   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 without them.

The Trisomy Medical list   - is support list for many variations of trisomy  sharing common medical issues Lists Archive

YaHoo Message boards owned and moderated by Bennett-Chadlen’s mother, Melissa Roy
Expecting-Blessings    Awaiting-Angel-Blessings Wishing-on-a-Star Broken-Hearted-Lullabies

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.

Preeclampsia Foundation Preeclampsia, Eclampsia, Toxemia, Pregnancy Induced Hypertension (PIH), Hellp Syndrome The Preeclampsia Foundation (PF) is a non profit organization dedicated to funding research, raising public awareness and providing support and education for those whose lives have been touched by preeclampsia and other hypertensive disorders of pregnancy. Know the symptoms, Trust yourself.

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 organizations.

MUMS: 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.

Trisomy Voices   A collection of AUDIO interviews with families touched by trisomy 18, trisomy 13, and other rare trisomy disorders.

Hope for Trisomy 13 & 18 Funding Research, Promoting Education, Raising Awareness and Changing Lives.

Maddison's Foundation - 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 medical experts

Noah's Never Ending Rainbow-A National Trisomy Organizationn is to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with Trisomy and related chromosome disorders. LINK page

Michael's Feat - 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. LINK page  

Brave Kids - Help for Children with Chronic, Life - Threatening Illnesses and Disabilities 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.

Human Genetic Disorders This website is committed to genetics education awareness. To obtain a better understanding about genetic revolution, we provide the history of genetics.

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 from you! Beneficial Therapies (Thinking outside the box)

Chromosome Disorder 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 and support.

Emedicine - INSTANT ACCESS TO THE MINDS OF MEDICINE

Support in the Philippines - Gabrielsymphonyis a 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.

What is Trisomy 13 - Patau's Syndrome?

• What is Trisomy 13 - Patau Syndrome?
• SOFT (Support Organization for Trisomy) Non USA Contacts
  Helps families all around the World - Universal Contacts Australia, Canada, Ireland, Northern Ireland, Mexico, New Zealand, Scotland, United Kingdom, Wales.
• The SOFT Times newsletter is mailed to active SOFT USA members  four times per year.  The newsletter contains family letters, pictures, helpful suggestions, professional input, SOFT conference information and more.  It is a wonderful source of information and contact for every SOFT member
• NEW SOFT – TRISOMY AWARENESS BRACELET - *Profits from the sale of this Trisomy Awareness bracelet go to the Joey Watson Fund (JWF). The JWF gives scholarships to help families with a portion of their travel expenses to attend the yearly SOFT Conferences (SOFT Photo Gallery)
• Join the New SOFT USA Facebook Group

From SOFT'S support site for Trisomy
COMMON PROBLEMS OF BABIES WITH TRISOMY 18 OR 13
Feeding Difficulties Slow Post Natal Growth Irritability and Constipation Low Muscle Tone & Neurological Problems Common Chronic Illnesses and Problems	Congenital Anomalies Usual Reported Causes of Death Long Term Survivor For the Professional Recommended Medical Care
FREE ~New Family Package from SOFT	Books available from SOFT

Organizations that have helped families attend the yearly SOFT (Support Organization for Trisomy) conventions:
SOFT &  Noah's Never Ending Rainbow   

Trisomy Awareness - Trisomy 21 is Down Syndrome.  I came across this well put together blog which share the daily new events as they pertain to the Trisomy community as a whole. Many of you are familiar with the poem Welcome to Holland Hope you enjoy this blog written in London, Welcome to Illinois