The following is a list of websites we have found helpful. For suggestions for additional sites please contact firstname.lastname@example.org.
Informative Websites for Patients and Families
American Academy of Pediatrics (AAP)
General pediatric information including a link to Healthychildren.org which includes information for parents and is available in English or Spanish.
American College of Surgeons (ACS)
Link to surgical patient education for a better recovery
American Pediatric Surgical Association (APSA)
Family and Parent resource pages that are designed to help patients and their families better understand what is happening when a child has been diagnosed with a medical or surgical condition.
BleedingControl.org is an initiative of the American College of Surgeons and the Hartford Consensus and contains diagrams, news, videos, and other resources contributed by a variety of other private and nonprofit partners to help prepare you in the event you are witness to massive bleeding from any cause, but particularly from an active shooter or explosive event where a response is delayed can result in death. Our shared goal is to provide you with a one stop, online resource to credible information on bleeding control. We hope you will never need to use this information, but if you do, at least you will have the assurance that the information is credible and timely.
Centers for Disease Control and Prevention (CDC)
The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States. Its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability both in the US and internationally. The CDC focuses national attention on developing and applying disease control and prevention.
Cerebral Palsy Guidance offers information and resources to aid parents and caregivers of children with cerebral palsy. This includes learning about treatment options and how to help manage the disorder so your child can still live a productive life.
Created to help families of babies born with Congenital Diaphragmatic Hernia by providing support services, promoting research and raising awareness.
Children’s Hospital Association (NACHRI)
The Children's Hospital Association (CHA) advances child health through innovation in the quality, cost and delivery of care with our children’s hospitals.
Children's Oncology Group (COG)
COG provides important information for children and their families from the time of diagnosis through treatment and following cure.
Choosing Wisely is an initiative of the American Board of Internal Medicine Foundation (ABIM) that seeks to advance a national dialogue on avoiding unnecessary medical tests, treatments and procedures. The American Academy of Nursing (AAN) announced in 2014 that it has joined the ABIM Choosing Wisely campaign with a list that focuses specifically on nursing interventions or practices that are not supported by evidence. The Choosing Wisely campaign is in alignment with the recent focus on patient-centered care, identified as one of the factors necessary for high-quality health care in a 2001 report from the Institute of Medicine. It is also worth noting that the initiative is in accord with goals of the Affordable Care Act (ACA), which has focused attention on improving quality of care while also controlling costs by reducing the use of unnecessary and sometimes harmful procedures and tests.
CSurgeries is an online surgical video journal dedicated to creating a centralized source of peer-reviewed surgical videos that are accessible to a wide audience, including students and professionals in all surgical disciplines.
Esophageal Atresia/Tracheoesophageal Fistula ea | tef
Including The EA/TEF Family Support Connection was formed by and for families of children born with esophageal atresia and tracheoesophageal fistula and the medical professionals who treat them.
Extracorporeal Life Support Organization
Extracorporeal Life Support Organization is an international non-profit consortium of health care centers and individuals who are dedicated to the development, evaluation and improvement of extracorporeal membrane oxygenation (ECMO) and other innovative therapies for support of failing organ systems in the neonate, child and adult. ELSO is made up of a broad multidisciplinary collaboration of physicians, nurses, perfusionists, respiratory therapists, technicians, researchers, and industry experts. Global chapters of ELSO provide education and expertise in ECMO delivery around the world.
Feeding Tube Awareness Foundation
The Feeding Tube Awareness Foundation was founded in 2010 to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention. The website is dedicated to providing pragmatic information for parents and caregivers on handling every aspect of tube feeding and navigating day-to-day life with a child who is tube-fed. The education materials are written in lay terms by those with personal experience. They are reviewed by medical professionals, and have been distributed by hundreds of children’s hospitals, medical practices, and medical supply companies.
Increase awareness and recognition of medical traumatic stress.
The HIE Help Center
Hypoxic-ischemic encephalopathy (HIE) is a neonatal brain injury caused by oxygen deprivation and limited blood flow to the baby's brain at or near the time of birth. HIE often causes disabilities including cerebral palsy, epilepsy, intellectual and developmental disabilities, and learning disabilities. The HIE Help Center provides information and educational materials to families of children with HIE to help them navigate the diagnosis.
Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.
One Nurse at a Time
Is a 501 (c)(3) nonprofit organization created by nurses who are passionate about giving back to local and global community through volunteer and humanitarian medical pursuits. They are dedicated to assisting other nurses enhance the nursing profession as they too, looking for opportunities to serve locally, nationally and internationally. One Nurse at a Time offers scholarships, education and networking opportunities for like -minded nurses.
Providing support and information for the families of children born with any of the variety of anorectal malformations or congenital colon disease and the associated defects.
Safe Kids Worldwide
Safe Kids Worldwide is a nonprofit organization working to help families and communities to help keep children safe from injuries. Safe Kids works with an extensive network of more than 400 coalitions in the United States. Additionally, they have partners in more than 30 countries to reduce traffic injuries, drownings, falls, burns, poisonings and more.
United Ostomy Association
United Ostomy Associations of America (UOAA) promotes quality of life for people living with ostomies and continent diversions through information, support, advocacy and collaboration.
American Association of Neuroscience Nurses (AANN)
The American Nurses Association (ANA)
American Society for Parenteral and Enteral Nutrition (ASPEN)
Association of Pediatric Hematology/Oncology Nurses (APHON)
Association of periOperative Registered Nurses (AORN)
Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)
Infusion Nurses Society (INS)
International Pediatric Endosurgery Group (IPEG)
The National Association of Orthopaedic Nurses (NAON)
National Association of Pediatric Nurse Practitioners (NAPNAP)
Oncology Nursing Society (ONS)
Pediatric Trauma Society (PTS)
Pediatric Urology Nurse Specialists (PUNS)
Society of Otorhinolaryngology and Head-Neck Nurses (SOHN)
Society of Pediatric Nurses (SPN)
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