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HEAL Study Research Update

HEAL Study Research Update

April 25th, 2024  | News  | Research

The HEAL Study looking at therapeutic hypothermia (cooling) and a medication called erythropoietin is one of the most recent, and most significant, clinical trials in the context of HIE research over the last decade. The results were technically “negative” – meaning erythropoietin didn’t show a clinical benefit – but the data collection and size of the cohort, 500 families strong […]

Support for Enrolled Families in Clinical Trials

Support for Enrolled Families in Clinical Trials

April 21st, 2024  | News  | Research

Enrolled in a clinical trial or research study? We’re building out dedicated groups for families to connect. HIE families have a long history of participation in clinical trials in the pursuit of improving therapeutic options and care (it’s why we have cooling!) Currently, there are two trials underway that we are supporting and have set up dedicated groups for: If […]

The Importance of Patient-Family and Clinical Data in HIE Progress: Q&A with Dr. Danielle Barber

The Importance of Patient-Family and Clinical Data in HIE Progress: Q&A with Dr. Danielle Barber

April 18th, 2024  | Advocacy  | HIE Education  | News  | Research  | Resources

Our families are all too familiar with the agonizing “wait and see” game that comes with an HIE diagnosis. The uncertainty surrounding our child’s long-term impacts, outcomes, and quality of life is a harsh reality we grapple with daily. We wait for results, we wait for researchers to uncover new therapeutic interventions, and we wait for data that could offer […]

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