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.
Cerebral Palsy Guide Provides educational, emotional and financial options for families and children who have been diagnosed with cerebral palsy.
Cerebral Palsy Guidance Provides comprehensive cerebral palsy information and assistance to families in need.
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
Hypoxic Ischemic Encephalopathy Hope for HIE A premier resource for families whose children have been diagnosed with hypoxic ischemic encephalopathy (HIE).
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.
The Preemie Primer A complete guide for parents of premature babies--from birth through the toddler years and beyond
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
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.
NICU Helping Hands A foundation that develops hospital and community-based projects that provide education and support to families of premature infants.
Early Bloomers Helps families with the challenges of caring for their early babies.
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 .
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 Necrotizing Enterocolitis is a free, audio podcast series about Necrotizing Enterocolitis (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 Speaking of NEC brochure is a companion piece to the audio podcast series of the same name. Download here http://www.morgansfund.org/wp-content/uploads/2016/11/Speaking_of_NEC_Brochure.pdf
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) emerged from one family’s recognition of the need to establish a mechanism for: •Disseminating credible and timely information about Necrotizing Enterocolitis (NEC) to parents whose infants are most at risk for developing NEC •Raising the level of public awareness about NEC and the potentially devastating effects it can have on infants and their families •Advancing research to prevent, diagnose, treat, and ultimately, cure NEC.
Named after Morgan, it celebrates his survival, courage and strength.
The Natural History Registry for Necrotizing Enterocolitis (NEC Registry) The Natural History Registry for Necrotizing Enterocolitis (NEC Registry) is 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). The NEC Registry is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the NEC community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the registry sponsor, Morgan’s Fund ensures that data privacy and confidentiality are strictly maintained. Participation in the NEC Registry is free and voluntary, and participants may withdraw at any time.