Links
Little Hearts Matter www.lhm.org
Little Hearts Matter is a national voice for families where a single ventricle heart condition, such as Hypoplastic Left Heart Syndrome, Tricuspid Atresia, Double Inlet Ventricle or Pulmonary Atresia has been diagnosed. The charity works with medical and social care teams to offer a multi-disciplinary approach to the support and information needed by this group of people and their careers.
Hypoplastic Left Heart Syndrome Angels health.groups.yahoo.com
Online support for those who have lost babies to hypoplastic left heart syndrome.
SIDS
First Candle/SIDS Alliance www.firstcandle.org
First Candle/SIDS Alliance is a national nonprofit health organization uniting parents, caregivers and researchers nationwide with government, business and community service groups to advance infant health and survival. With help from a national network of member and partner organizations, we are working to increase public participation and support in the fight against infant mortality.
Stillbirth
Missing Grace Foundation www.missinggrace.org
Missing GRACE Foundation’s mission is to provide resources and support for families that have experienced: pregnancy loss, infant loss, infertility or adoption and to advocate for comprehensive, patient focused prenatal care for all women. Five core areas encompass the heart of the mission: Grieve, Restore, Arise, Commemorate and Educate. The nonprofit foundation is dedicated to raising awareness of stillbirth prevention methods and ways to reduce risk of all types of pregnancy and infant death.
Genetics
Genetic and Rare Condition Site www.kumc.edu
Site contains information on genetic conditions /birth defects for professionals, educators, and individuals.
A Trisomy 18 Journey www.geocities.com
A website created by parents who experienced the loss of a baby to Trisomy 18. The site offers hope to those who have just received this diagnosis or a similar diagnosis or who have experienced a loss due to this diagnosis as well as helpful information on Trisomy 18.
Multiples
Center for Loss in Multiple Birth www.climb-support.org
Network of parents throughout the United States, Canada, Australia, New Zealand and beyond who have experienced the death of one or more, both or all of our twins or higher multiples at any time from conception through birth, infancy and childhood.
Website provides comprehensive written materials and resources specific to the loss of multiples.
Fetal Hope Foundation www.fetalhope.org
The Fetal Hope Foundation provides support and information for families and medical professionals about fetal distresses and syndromes afflicting multiples such as Twin-to-Twin Transfusion Syndrome, Acardiac Twinning (TRAP sequence), Amniotic Band Syndrome and Fetal Lower Urinary Tract Obstruction. The organization, which is aligned with some of the world’s leading fetal medicine centers, also funds research, increases awareness with events such as its TTTS Race for Hope, and serves as an outlet for leading medical information.
The Twin to Twin Transfusion Syndrome www.tttsfoundation.org Transfusion Syndrome Foundation provides immediate and lifesaving educational, emotional and financial support to families, medical professionals, and other caregivers before, during, and after a diagnosis of twin to twin transfusion syndrome. The Foundation is dedicated to saving the babies, improving their future health and care, providing NICU, special needs and bereavement support, furthering medical research, and keeping families together the way twins are meant to be.