EHE Biobank

Why Should You Donate Your Tissue, Blood or Fluids

Research is the key to developing new treatments and cures for diseases, and researchers need tumor tissue and blood from EHE patients to understand disease progression and speed early development of new drugs and therapies. As a rare cancer patient and a Biobank donor, you will be directly contributing to EHE research!

How to Contribute to the Biobank

  • If you have an upcoming surgery or doctor’s visit: If you have an upcoming surgery or may have fluid drained please email us to let our team know about your upcoming procedure. Please let our team know as early as possible.
  • If you have had surgery in the past: Tumor tissue that was taken during a previous surgery might be stored at the hospital where you were treated. This could include tissue from a biopsy, a surgical resection, or transplant. Please email us to provide information to our team about a prior surgery so that we may attempt to locate and obtain your tissue for the EHE Biobank.
  • Be a Legacy donor - Your generosity could bring us closer to a cure. Many patients find that planning a posthumous legacy tissue donation is empowering and provides comfort, knowing they are contributing to a better understanding of EHE and bringing hope to others. Our team will work with you to arrange a legacy tissue donation that minimizes disruption and brings meaning to a difficult time.

Our team will contact you to discuss your upcoming procedure and will guide you through the Informed Consent process. If you have any questions, please email [email protected].

Our Goal is to Make this Process as Simple as Possible

Once you provide our team with information about your upcoming surgery or procedure, you will be asked to sign a Consent Form. This will allow our team to inquire about your upcoming surgery or procedure, or any tissue collected in the past. Additionally, this will give our team permission to collect any medical information from your doctor that may be directly relevant to the tissue or fluids you donate. Once this step is complete, your job is done. Our team will take care of contacting the hospital and coordinating the transfer of the tissue or fluids to the EHE Biobank.

Please contact our team with your surgery or procedure information as early as possible. As soon as you provide us with information about your upcoming surgery or procedure, we will be in touch with you. In the meanwhile, if you have any questions please reach out to our team.

About the EHE Biobank

The EHE Biobank is an open, ongoing collection of tissue samples and other biospecimens, including blood and bodily fluids donated by people with EHE. The Biobank has been developed by The EHE Foundation with the generous support of private donations and grants to accelerate EHE research. The EHE Biobank preserves EHE biospecimens and makes them available to qualified researchers whose research has been reviewed for its science and the protection of the rights of those who donate.

Because EHE is a rare cancer, researchers are limited by the lack of available tissue with which to conduct research. Until recently, there has not been any substantial collections of EHE tissue or body fluids to support ongoing or new research. The EHE Biobank was established in fall of 2020 and will provide researchers with invaluable medical and scientific information that will help understand and treat patients today, and hopefully find better treatments and a cure for EHE in the future.

Contact the EHE Biobank

Please provide your contact information below and tell us about your interest. If your inquiry is time sensitive and you are having a surgery or procedure soon, please let us know.

  • Please be sure to provide a phone number if this is your preferred method of contact.
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Patty Cogswell
EHE Foundation Biobank Coordinator

EHE Biobank FAQs