Tissue Donation
Patients Powering Discovery
EHE Biobank
Donating tumor tissue or fluid to the EHE Biobank is one of the most impactful ways you can help researchers make progress in EHE
EHE is so rare that researchers have very limited access to EHE cells, essential to study the disease, understand how it varies from person to person, and develop treatments. Every donated specimen brings us closer to new treatments and a cure.
Ways to Donate Tissue or Fluids
- If you have an upcoming surgery or procedure, contact us as early as possible. We will work with you to plan ahead so tissue or fluid can be collected at the time of your procedure.
- If you are considering surgery or a liver transplant, please get in touch. You do not need to have surgery scheduled.
- If you have already had surgery and tumor tissue was removed, you can donate that tissue for EHE research.
- Plan to be a legacy donor, providing a lasting contribution to EHE research.
Take Action to Power Discovery
Only people diagnosed with EHE have the power. Tissue donation removes a major research barrier and enables scientific breakthroughs.
The process is simple. We do all the work to coordinate your tissue donation only when you are ready.
Step 1. Use the form below to contact the EHE Biobank or email [email protected]. Tell us a little about your surgery or procedure, and if it’s happening soon, let us know.
Step 2. You will be asked to sign the EHE Biobank Consent Form. This allows our team to work with your hospital and to collect relevant medical information.
Step 3. We do the rest. Our team coordinates the appropriate logistics to get your donated tissue or fluid to the EHE Biobank.
A note from Seth Haddix, PhD, Biobank Coordinator
When patients are thinking about surgery, a new biopsy, or another 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. More information is available in a recent blog post.
“Every donation helps write the next chapter of EHE research. One person could be the key to unlock a breakthrough in our understanding of EHE.
Kristianne Oristianne, PhDDirector, Research & Engagement
Become a Legacy Donor
Posthumous tissue donation is a lasting contribution to EHE research and the EHE community. This gift may bring comfort to patients and families in knowing their tissue donation will help others facing EHE. Legacy donations can be planned at any time, and early planning is encouraged. Our team will support your legacy donation with compassion and care.
Unsure About Surgery?
People who are unsure about surgery, including a liver transplant, can still make a plan to donate EHE tissue. Planning ahead is easy, and our team will be ready if or when you have a procedure. Make a plan. It takes one step: contact [email protected].
EHE Biobank FAQs
More Ways to Power EHE Research
Discover additional ways to share your experience, raise your voice, and accelerate progress.