Progress Starts With You
Your Role in Research
Each person’s contribution to EHE science makes a difference, one that can build a better future for people diagnosed with EHE. Find a way to advance research that is right for you. Here's what to know and how to get started.
Why Your Participation Matters
EHE is an ultra-rare cancer, affecting roughly 1 in 1 million people. In any given country, that can mean as few as 10 people or as many as a few hundred living with the disease.
Cancer research is designed to study common cancers like lung, breast, and gastrointestinal cancers that affect hundreds of thousands of people. The rarity of EHE challenges the traditional research model. Most scientists and clinicians simply do not have access to the data, biospecimens, and people they would need to study EHE.
At the EHE Foundation, we champion patient-powered research: an informed, engaged, collaborative model that turns lived experience into data and resources researchers can use. Every person affected by EHE who joins a clinical trial, shares their experience, or donates tissue expands our understanding of EHE.
Patient-Powered Projects Driving Progress
Researchers need two things to make progress on EHE: information about how the disease behaves in people, and tumor tissue they can study in the lab.
High-quality real-world data reveals which treatments work better for different presentations of EHE. The EHE Global Patient Registry captures this from people's own reported experiences. The xCures Observational Study captures it from medical records. One complements the other, and they are essential to advance clinical science.
Studying EHE tumor tissue, living and preserved, is critical to understanding the biology behind EHE: how tumors differ across organs, various presentations, and in different types of people. Through the EHE Biobank, the EHE Foundation facilitates ethical, de-identified tissue collection and distribution to enable this essential laboratory research.
Learn More & Sign Up
EHE Global Patient Registry
Your experience is essential to advancing care options. Share information about your diagnosis, treatment, symptoms, and quality of life through secure online surveys.
Tissue Donation
Tumor tissue is a critical resource for research. Donate tumor tissue or fluid from an upcoming or prior procedure to the EHE Biobank.
xCures Observational Study
Medical records can be converted to regulatory-grade clinical data to identify which treatments work better for EHE.
Quick-Start Guides
Clinical Trials for People With EHE
Clinical trials are how new treatments reach the people who need them. For someone with advanced EHE who needs treatment, a trial may be the best option.
The EHE Foundation invests time and resources in working with drug developers to keep EHE clinical trials a priority. Explore currently enrolling studies to see if a clinical trial is right for you.
Advancing Research is Our Mission
As the largest dedicated source of funding focused exclusively on EHE, the Foundation invests in the areas of science with the greatest potential to drive progress. We are building a research-ready community of people affected by EHE, advocates, researchers, and clinicians.
Your participation is the accelerator. YOU are how we can get to better treatments and, one day, a cure for EHE.
Latest EHE Research News
Accelerate Research
Financial contributions drive progress. Help us move faster.