- Who We Are
- What is HIE?
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- HIElights of Hope
Working on improving the quality of life for children and families with HIE, we are better together.
Hope for HIE is the premiere global nonprofit patient advocacy and support organization dedicated to children and families with neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy.
HIE is the second leading cause of infant mortality worldwide, a leading cause of cerebral palsy, epilepsy, learning and attention differences and disabilities, and other neurodevelopmental challenges. It has a range of causes, a spectrum of outcomes, and very few therapeutic interventions available to decrease death and disability.
Through our accelerated organizational growth and development, we collaborate with many different stakeholders, bringing our community expertise to advance research, development, and advocacy initiatives that decrease the incidence and impact of HIE. Our network represents families and providers from over 60 countries, across six continents, around the world. We are able to facilitate comprehensive, large scale, international projects and conversations with researchers and clinicians that other groups are not, due to our unique approach, and leadership bench strength and expertise as a patient and family organization.
Through our initiatives, we’ve been able to:
Our work is only made possible by the generous support of our community – our Partners in Hope, community giving, and you.
If you are interested in partnering with us, reach out to us.
Hope for HIE regularly partners and participates in a variety of collaboratives to move forward the mission of the organization, decrease the incidence and impact of HIE, accelerate research, and convene multistakeholder groups.
HIE advocacy begins in pregnancy with obstetric providers, continues through the NICU and PICU, and out across the many co-morbidities associated with HIE.
HIE is one of the leading causes of non-premature NICU and PICU hospitalizations, yet the disparity in messaging, education and connection for families is a significant unmet need. Through Hope for HIE’s involvement with different organizations, we are working to close these gaps and barriers to care, communication and connection.
We believe coming together where commonalities exist better accelerates all missions forward for optimal care and outcomes for families.
Hope for HIE’s global community has decades of expertise in best practice development for patient advocacy involvement in clinical trials — from the TOBY trials & Shankaran whole body cooling studies, to the HEAL study and beyond. We lead and collaborate on various stages of research and development for scientific and therapeutic areas relating to HIE with both academic and industry-based innovation in pharmacologic and medical technology/device development, including implementing and licensing Hope for HIE’s Halo of Support(tm) framework for longitudinal clinical trials.
Through our Partners in Hope program, we work with corporate donors, industry partners, and sponsors to find affinities and collaborate on mutual objectives, ensuring the sustainability of Hope for HIE’s organization and programming.
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