Disorder Resources
Locate resources for disorders that can lead to or prolong a NICU stay
Please place a resource addition request if you would like your organizational information included
Please place a resource addition request if you would like your organizational information included
Kids Health / Birth Defects
Information about the causes of, and treatment for various birth defects
Rare Share
A unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders
Birth Defect Research for Children
Provides parents and expectant parents with information about birth defects and support services for their children.
Anencephaly
AnencephalyInfo.Org
Contains many links to various sites which offer anencephaly support information, as well as grief support resources
Autism
Sesame Street and Autism
Developed with input from parents, people who serve the autism community, and people with autism, See Amazing in All Children offers families ways to overcome common challenges and simplify everyday activities.
Cerebral Palsy
Cerebral Palsy Foundation
Committed to serving the needs of children internationally with Cerebral Palsy, their families, and the care givers involved in their care.
Clubfoot
Clubfoot Club
Information & support resources for those born with clubfeet
Congenital Heart Defects
Mended Little Hearts
A support program for parents of children with heart defects and heart disease
Congenital Heart Defects
Provides a variety of information and support links
Kids Health / CHD
Overview & treatment options
Gastroschisis
Gastroschisis
Provides information regarding the prenatal diagnosis and treatment
Avery's Angels
Provides information about the disease, treating hospitals, state and national stats, procedures and FAQ's
Hydranencephaly
Rays of Sunshine Hydranencephaly Information and support
A voluntary organization whose purpose is to provide information and support to families of children who have hydranencephaly.
Hypoxic Ischemic Encephalopathy
Hope for HIE
A premier resource for families whose children have been diagnosed with hypoxic ischemic encephalopathy (HIE).
Marfan Syndrome
Kids Health / Marfan Syndrome
Overview about Marfan Syndrome, it’s causes, & treatment plans
Omphalocele
Omphalocele
Provides information regarding the prenatal diagnosis and treatment following birth
Osteogenesis Imperfecta
The OI Foundation
The OI Foundation has a mission to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support.
Prader-Willie Syndrome
Prader-Willie Syndrome Association
An organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willie Syndrome
Spina Bifida Association
Spina Bifida Association
Serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service
Trisomy
S.O.F.T.
Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children
Trisomy Online
Trisomy Online is a free email based support group that was formed in 1997 for families and professionals whose lives have been touched by the diagnosis of a trisomy condition
Noah's Never Ending Rainbow
Mission is to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with Trisomy and related chromosome disorders
Trisomy 18
Mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families
Spinal Muscular Atrophy
FightSMA
An international nonprofit organization dedicated to a treatment or cure for Spinal Muscular Atrophy (SMA), the leading inherited cause of infant death.
Information about the causes of, and treatment for various birth defects
Rare Share
A unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders
Birth Defect Research for Children
Provides parents and expectant parents with information about birth defects and support services for their children.
Anencephaly
AnencephalyInfo.Org
Contains many links to various sites which offer anencephaly support information, as well as grief support resources
Autism
Sesame Street and Autism
Developed with input from parents, people who serve the autism community, and people with autism, See Amazing in All Children offers families ways to overcome common challenges and simplify everyday activities.
Cerebral Palsy
Cerebral Palsy Foundation
Committed to serving the needs of children internationally with Cerebral Palsy, their families, and the care givers involved in their care.
Clubfoot
Clubfoot Club
Information & support resources for those born with clubfeet
Congenital Heart Defects
Mended Little Hearts
A support program for parents of children with heart defects and heart disease
Congenital Heart Defects
Provides a variety of information and support links
Kids Health / CHD
Overview & treatment options
Gastroschisis
Gastroschisis
Provides information regarding the prenatal diagnosis and treatment
Avery's Angels
Provides information about the disease, treating hospitals, state and national stats, procedures and FAQ's
Hydranencephaly
Rays of Sunshine Hydranencephaly Information and support
A voluntary organization whose purpose is to provide information and support to families of children who have hydranencephaly.
Hypoxic Ischemic Encephalopathy
Hope for HIE
A premier resource for families whose children have been diagnosed with hypoxic ischemic encephalopathy (HIE).
Marfan Syndrome
Kids Health / Marfan Syndrome
Overview about Marfan Syndrome, it’s causes, & treatment plans
Omphalocele
Omphalocele
Provides information regarding the prenatal diagnosis and treatment following birth
Osteogenesis Imperfecta
The OI Foundation
The OI Foundation has a mission to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support.
Prader-Willie Syndrome
Prader-Willie Syndrome Association
An organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willie Syndrome
Spina Bifida Association
Spina Bifida Association
Serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service
Trisomy
S.O.F.T.
Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children
Trisomy Online
Trisomy Online is a free email based support group that was formed in 1997 for families and professionals whose lives have been touched by the diagnosis of a trisomy condition
Noah's Never Ending Rainbow
Mission is to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with Trisomy and related chromosome disorders
Trisomy 18
Mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families
Spinal Muscular Atrophy
FightSMA
An international nonprofit organization dedicated to a treatment or cure for Spinal Muscular Atrophy (SMA), the leading inherited cause of infant death.
Prematurity
Prematurity.Org
Preemie Parent Support
Kids Health / Prematurity
A Primer on Preemies in the NICU
Preemie Babies 101
A parent blog inspired by the many diverse experiences that are common to parents of preemies.
The Preemie Primer
A complete guide for parents of premature babies--from birth through the toddler years and beyond
National Premature Infant Health Coalition
A collaborative of professional, clinical, community health, and family support organizations focused on improving the lives of premature infants and their families.
Preemie Proud
A store that caters exclusively to premature babies (preemie) and low birth weight infants through various stages of development – from in the NICU to going home
Preemie Help
Providing resources and information for parents, friends, family, and experts interested in, or affected by, premature birth
NICU Helping Hands
A foundation that develops hospital and community-based projects that provide education and support to families of premature infants.
It’s a Preemie Thing
Offers specialty NICU clothing and merchandise.
Breastfeeding Premature Infants
A collection of reprinted material from La Leche League offering breastfeeding advice and support to parents of premature infants.
Preemie Babies 101
A parent blog inspired by the many diverse experiences that are common to parents of preemies.
Preemies Today
A national preemies support network that provides a meaningful connection for preemies families both in the NICU and beyond by enabling them to meet others families whose lives have been affected by premature birth.
National Premature Infant Health Coalition
A collaborative of professional, clinical, community health, and family support organizations focused on improving the lives of premature infants and their families.
Graham's Foundation
Graham’s Foundation empowers parents of premature babies through support, advocacy and research to improve outcomes for their preemies and themselves. In addition to care package programs, they have trained parent mentors available
Early Bloomers
Helps families with the challenges of caring for their early babies.
Baby First
Providing educational resources and support to caregivers and parents of premature infants.
Prematurity.Org
Preemie Parent Support
Kids Health / Prematurity
A Primer on Preemies in the NICU
Preemie Babies 101
A parent blog inspired by the many diverse experiences that are common to parents of preemies.
The Preemie Primer
A complete guide for parents of premature babies--from birth through the toddler years and beyond
National Premature Infant Health Coalition
A collaborative of professional, clinical, community health, and family support organizations focused on improving the lives of premature infants and their families.
Preemie Proud
A store that caters exclusively to premature babies (preemie) and low birth weight infants through various stages of development – from in the NICU to going home
Preemie Help
Providing resources and information for parents, friends, family, and experts interested in, or affected by, premature birth
NICU Helping Hands
A foundation that develops hospital and community-based projects that provide education and support to families of premature infants.
It’s a Preemie Thing
Offers specialty NICU clothing and merchandise.
Breastfeeding Premature Infants
A collection of reprinted material from La Leche League offering breastfeeding advice and support to parents of premature infants.
Preemie Babies 101
A parent blog inspired by the many diverse experiences that are common to parents of preemies.
Preemies Today
A national preemies support network that provides a meaningful connection for preemies families both in the NICU and beyond by enabling them to meet others families whose lives have been affected by premature birth.
National Premature Infant Health Coalition
A collaborative of professional, clinical, community health, and family support organizations focused on improving the lives of premature infants and their families.
Graham's Foundation
Graham’s Foundation empowers parents of premature babies through support, advocacy and research to improve outcomes for their preemies and themselves. In addition to care package programs, they have trained parent mentors available
Early Bloomers
Helps families with the challenges of caring for their early babies.
Baby First
Providing educational resources and support to caregivers and parents of premature infants.
Complications
Little Bear Sees
Strives to provide the information and tools necessary for helping children with CVI learn how to see.
NEC Society
A diverse group of healthcare practitioners, researchers, and families from across the country who seek to protect premature infants from necrotizing enterocolitis.
Speaking of NEC
Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.
The Cord Blood Center
Provides you and your family with relevant information on cord blood, banking options and emerging research, so you can make the best decision possible for your family.
The Morgan Leary Vaughan Fund
The Morgan Leary Vaughan Fund (Morgan's Fund) provides information and awareness about NEC
The Natural History Registry for Necrotizing Enterocolitis (NEC Registry)
A collaborative effort between The Morgan Leary Vaughan Fund (Morgan’s Fund) and the National Organization for Rare Disorders (NORD) to study Necrotizing Enterocolitis (NEC).
Little Bear Sees
Strives to provide the information and tools necessary for helping children with CVI learn how to see.
NEC Society
A diverse group of healthcare practitioners, researchers, and families from across the country who seek to protect premature infants from necrotizing enterocolitis.
Speaking of NEC
Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.
The Cord Blood Center
Provides you and your family with relevant information on cord blood, banking options and emerging research, so you can make the best decision possible for your family.
The Morgan Leary Vaughan Fund
The Morgan Leary Vaughan Fund (Morgan's Fund) provides information and awareness about NEC
The Natural History Registry for Necrotizing Enterocolitis (NEC Registry)
A collaborative effort between The Morgan Leary Vaughan Fund (Morgan’s Fund) and the National Organization for Rare Disorders (NORD) to study Necrotizing Enterocolitis (NEC).
