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This observational platform aims to learn from the experiences of all EHE patients by collecting real-time, deidentified data from medical records to identify treatments that may show promise in EHE patients.
As part of your participation, you will receive a consolidated, structured summary of your medical records.
Your medical history is a rich source of information that may accelerate the discovery of effective treatments for people living with EHE. Together, EHE patients can leverage their medical records to advance clinical science.
If you have been diagnosed with EHE, you are rare – less than 1 in 1 million people are diagnosed with EHE. By combining your medical data with that of other EHE patients – without sharing your identity – doctors and researchers can identify and prioritize treatments that may show promise.
EHE presents differently in different people, making it hard for doctors and researchers to collect data from enough patients to understand how to treat or manage all of its different presentations. Combining data allows doctors and researchers to review more data on different kinds of presentations.
Data can help answer essential research questions and meaningfully advance clinical science. You are powering the acceleration of research!
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