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  • Home
  • About
    • Locations >
      • Alabama
      • Delaware
      • Glendale, Arizona
      • Greater Lafayette
      • Greater Philadelphia Area
      • Greater Pittsburgh
      • Kansas
      • Morristown, New Jersey
      • New Hampshire
      • New York
      • North Carolina
      • Northeast Georgia
      • Reading, Pennsylvania
      • Southern Illinois
      • Southern New England
      • Terre Haute Indiana
    • Mission
    • History
    • Contact Us
    • Board of Directors
    • Financials
  • GIVE
    • Giving Tuesday
    • Make a Gift
    • Match Your Gift
    • Host a Fundraiser
    • Volunteer Opportunities
  • NICU Support
    • NICU Awareness Month
    • Care Packages
    • Food & Fuel Assistance
    • NICU Grad
    • Milestones
    • Facebook Forum
    • Mental Health Worksheets
    • Other Resources >
      • Regional Resources
      • National Resources
      • Disorder Resources
      • For Health Professionals
  • Bereavement Support
    • Memory Boxes
    • Write Your Grief
    • Luminary Vigils
    • Graphic Request
    • Other Resources
    • Hospital Memory Box Orders
  • NEWS & EVENTS
    • Dancing in the Rain
    • Turco Legal Softball Fundraiser
    • CuddlePea Buy 1 GIVE 1
    • In the News
  • Shop

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
​
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
Reaching for the Stars
Committed to serving the needs of children internationally with Cerebral Palsy, their families, and the care givers involved in their care.

Cleft and Craniofacial Defects
Cleft Palate Foundation  
Enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects

Clubfoot
Clubfoot Club  
Information & support resources for those born with clubfeet  

Congenital Diaphragmatic Hernia 
Breath of Hope 
Raises awareness of congenital diaphragmatic hernia by working with parents, family members, and medical professionals to educate and support all who are affected by or want to learn more about CDH

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
Global Hydranencephaly Foundation 
A network for ensuring quality of life for the families touched by this rare neurological condition

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.

PreemieCare 
A non-profit organization dedicated to supporting families of infants born preterm through education, support, and resources.

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.


It’s a Preemie Thing 
Offers specialty NICU clothing and merchandise.


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 . 


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.

The Cord Blood Center 
​
P
rovides 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. ​
Project Sweet Peas is a registered 501(c)3 nonprofit organization incorporated in the state of Pennsylvania. FEIN # 273679594


Related Websites:

www.nicuawareness.org
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