Tissue Donation

The EHE Foundation continues to partner with Pattern.org on tissue donation. Pattern.org enables cancer patients to direct their tumor tissue to researchers working on building cancer models. Our partnership with Pattern.org empowers EHE patients to be directly involved in cancer research.

Tissue and medical data shared by patients through Pattern.org help scientists develop next generation cancer models, which will be made widely available to the research community. Using these models, researchers can identify cancer’s key points of vulnerability and accelerate drug development. Pattern.org, was launched by the Rare Cancer Research Foundation (rcrf.org) a 501(c)3 non-profit dedicated to curing rare cancers through strategic investments and collaborations that catalyze effective research and accelerate deployment of promising therapies.

Contact Us with Questions!

Lisa DeYoung, Director of Patient Services
925-9986693
lisadeyoung@fightehe.org

Why should I consider donating my tumor to research?

Tumor and tissue donations help scientists to learn more about cancer. Without tissue and tumor samples to study cancer, it is difficult to understand the disease well enough to identify its vulnerabilities.

The EHE Foundation has partnered with Rare Cancer Research Foundation’s Pattern.org to help patients through the tissue donation process. This partnership is part of a larger effort to establish and genetically develop cell lines, which are cells that keep dividing and growing over time, under certain conditions in a laboratory. In developing these cell lines, researchers are trying to enable the scientific community to improve our understanding of cancer and ultimately lead to the identification of targeted treatment.

org was launched by the Rare Cancer Research Foundation (rarecancer.org) a 501(c)3 non-profit dedicated to curing rare cancers through strategic investments and collaborations that catalyze effective research and accelerate deployment of promising therapies.

How do I donate my tumor tissue for research through the EHE Foundation?

Research starts with patients’ authorizing donation of fresh tissue and fluids gathered at the time of surgery. Either original tumor samples, or metastatic, can be donated.

To contribute your tissue, contact Lisa DeYoung, Director of Patient Services, at 925-998-6693 or lisadeyoung@fightehe.org at least one week prior to surgery. This lead time is very important as it allows enough time for a tissue donation kit to be sent to your medical facility. Lisa will work with you at every step of the way to make the process is as easy and successful as possible.  If you have any questions, please do not hesitate to contact Lisa.

Who do I contact to help me donate my tissue for research?

Please contact Lisa DeYoung, EHE Foundation Director of Patient Services at 925-998-6693 or lisadeyoung@fightehe.org at least one week prior to surgery.

Will I receive the result of any research done on my tumor?

You will not receive results on any research done on your tumor.

Does donating my tumor affect the surgical procedure?

No. We are requesting only excess tissue from your surgery that isn’t needed for your medical care.

How does my doctor know what to do once I complete the forms?

Pattern.org will get in touch with your doctor and surgical institution to provide instructions for what is needed to fulfill your request for donation.

How long before surgery do I need to complete the consent?

If you decide you want to contribute excess tissue to a research project, we ask you contact Lisa to get more information and complete the informed consent at least a week before your scheduled date of surgery.

Is there a cost to me?

There is no cost to patients to contribute tissue to research through Pattern.org.

Can I donate my tumor if I'm not receiving care in the United States?

If your procedure or biopsy will be outside the continental United States, unfortunately, we are not able to accommodate your tumor tissue donation at this time.

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