Hypoxic-Ischemic Encephalopathy (HIE) Resources

Below is a list of useful resources for learning more about hypoxic-ischemic encephalopathy (HIE). Here, we have gathered a number of useful online resources that offer people and families interested in learning more about HIE insightful knowledge, support, and direction. These websites provide a variety of information to assist you in negotiating the complexity of HIE and obtain the support you need, whether you are a parent, carer, or someone interested in learning more about this condition. So start your journey of education and empowerment by looking at these reliable sources.

  1. Hope for HIE (https://www.hopeforhie.org/): This website offers a wealth of information, resources, and support for families affected by Hypoxic-Ischemic Encephalopathy (HIE). It provides educational materials, research updates, family stories, and a supportive community forum.
  2. HIE Help Center (https://hiehelpcenter.org/): The HIE Help Center provides comprehensive information about HIE, including causes, symptoms, diagnosis, and treatment options. It offers resources for parents, including guides, articles, and links to support organizations.
  3. National Institute of Neurological Disorders and Stroke (NINDS) – HIE Information Page (https://www.ninds.nih.gov/Disorders/All-Disorders/Hypoxic-Ischemic-Encephalopathy-Information-Page): NINDS offers a detailed information page on HIE, covering its causes, symptoms, diagnosis, treatment, and research initiatives. It provides a solid foundation of knowledge for parents seeking to understand the condition.
  4. American Academy of Pediatrics (AAP) – HIE Information (https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/PEHDIC/Pages/HIE.aspx): The AAP offers valuable resources on HIE, including clinical guidance, research updates, and advocacy efforts to improve outcomes for infants affected by HIE. It provides information for both healthcare professionals and families.
  5. Children’s Hemiplegia and Stroke Association (CHASA) (https://chasa.org/): CHASA focuses on supporting families and individuals affected by childhood stroke, which can sometimes be related to HIE. Their website offers resources, community support, and educational materials to help families navigate the challenges associated with HIE and related conditions.
  6. Centers for Disease Control and Prevention (CDC) – HIE Information (https://www.cdc.gov/ncbddd/hie/index.html): The CDC provides informative resources on HIE, including risk factors, prevention strategies, and research updates. It also offers information on related topics such as neonatal encephalopathy.
  7. International Child Neurology Association (ICNA) – HIE Fact Sheet (https://www.icnapedia.org/icnapedia-collaborative-platform/hypoxic-ischemic-encephalopathy-hie-fact-sheet): The ICNA offers a comprehensive fact sheet on HIE, covering various aspects of the condition, including definitions, causes, diagnosis, management, and long-term outcomes.
  8. MyChild at Cerebral Palsy Family Network (https://cpfamilynetwork.org/resource-directory/): This online resource directory provides links to numerous organizations, services, and support groups for children with cerebral palsy and related conditions, including HIE. It offers a wide range of resources and connections to help families navigate their journey.
  9. HIE Resource Guide by Cerebral Palsy Group (https://www.cerebralpalsygroup.com/conditions/hypoxic-ischemic-encephalopathy/): The HIE Resource Guide offers information, treatment options, support services, and legal resources for families dealing with HIE. It provides a comprehensive overview of the condition and related topics.
  10. HIE Moms (https://hiemoms.org/): HIE Moms is an online community and support group for mothers and families affected by HIE. It offers a safe space for sharing experiences, asking questions, and finding support from others who have gone through similar situations.