N/IICU Services at King of Prussia Campus
The Newborn/Infant Intensive Care Unit (N/IICU) at CHOP's Middleman Family Pavilion in King of Prussia, Pa., is a Level III unit that provides specialized care.
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N/IICU Services at Philadelphia Campus
The Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) located on our Philadelphia Campus is one of the biggest and best in the world.
Philadelphia Ronald McDonald House
The Ronald McDonald House serves as a "home-away-from-home" for families whose children are being treated at nearby hospitals. The Philadelphia Ronald McDonald House has rooms available for patient families as well as mothers undergoing fetal surgery or delivering in CHOP’s Special Delivery Unit.
Guided Relaxation Exercises
This guided video recording can help create a more peaceful and restful state of mind for parents, caregivers, and adolescent/young adult patients.
Undiagnosed Diseases Network (UDN)
Research program funded by the National Institute of Health (NIH). Some patients seen in the CHOP UDP are eligible and will also be asked if they want to enroll in the research side. You can visit their website to learn more about the research they conduct. Adult patients may be seen by the UDN site at Penn.
National Organization for Rare Disorders (NORD)
An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.
Applying for Pennsylvania Medical Assistance (PAMA)
This resource from Children’s Hospital of Philadelphia describes how to apply for PA medical assistance as secondary insurance.
Orphan Disease Program
Visit this website for details on orphan (rare) diseases and treatments. Additional information like drug development, orphan product designations, and how the FDA supports rare disease research. You can also find a list of drugs approved for rare conditions and ongoing clinical trials.
Ryan’s Case for Smiles CopingSpace
This website provides resources for families that of children with any medical diagnosis, including sibling supports, caregiver supports, age appropriate books and resources. They also outline TV shows, educational resources for providers, educators, and mental health resources
RareShare
Create an account to join closed support groups specific to rare genetic conditions including undiagnosed.