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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
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.
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 Alliancee 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.
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 Deletion
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.
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.
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 |
Just diagnosed with a Trisomy child? Are you asking yourself what should I
do first? Do you want to talk with someone as soon as possible?
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