By Seth Haddix, PhD | EHE Biobank Coordinator

When patients are thinking about surgery, a new biopsy, or other procedure, their minds are filled with decisions and worry. Tissue donation isn’t usually top of mind, and for more common cancers, it is not something we think about as a priority. For an ultra-rare cancer like EHE, every single EHE surgery or procedure is an opportunity to advance science and ultimately improve lives. When only 1 in a million people have the disease, and only a fraction of those people have a procedure that could provide EHE cells to study, it takes everyone working together to make progress. 

How will tissue donation help people with EHE? 

1. EHE biospecimens are required to make preclinical disease models. EHE cells taken from a surgery or fluid drain are invaluable resources needed to establish human-derived cell lines and PDX models to enable in vitro and in vivo studies – critical for novel biomarkers and treatments.
2. Tissue donation from different patients can help researchers study why EHE presents differently in different people, in different organs, and with different symptoms. If we rely on only one or two biospecimens or EHE model systems, we cannot fully understand the disease, so multiple patient tissues are needed. 
3. By looking across biospecimens, we aim to identify biomarkers of the disease that can predict when EHE is changing from an indolent to a progressing form, and also know when a treatment is or is not working. Biomarkers could also help doctors know which patients might benefit from targeted therapies in the future. 

What are some common misunderstandings about donating to the EHE Biobank? 

• If your doctor says they will ‘send’ your EHE tumor tissue or fluid drain to the EHE Biobank, they cannot do that without you contacting the EHE Biobank first. The only way to get tissue to the EHE Biobank is by a person giving their consent to the EHE Biobank. 
• We desperately need ‘fresh’ tissue or fluid taken from a person. Tissue taken at the time of surgery is critical for model development. Getting in touch with the Biobank as early as possible helps us prepare for the tissue collection during surgery.
• You do not have to have your surgery or procedure date confirmed – we can begin preparing for a potential tissue donation while you finalize your care plan. 
• Tissue donation isn’t hard. If you’ve ever decided to be an organ donor, you probably made that decision because you knew you could one day potentially help someone else. EHE tissue (or fluid) donation is as easy. We do need your consent to speak with your doctor, and we need some basic medical information. After that, we do 100% of the coordination with your medical team – at no cost to you. The EHE Foundation covers all costs. 

Make a plan to give hope today! If you are considering a liver transplant, surgery, or potentially will have fluid drained, please contact [email protected] or call 1-877-460-4240, Ext 2.