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Every April, The EHE Foundation and the global patient and caregiver community share stories and facts about EHE to rally support for the advancement of EHE research. Wherever you are, we encourage you to participate and help us raise #EHEAwareness.
About Epithelioid Hemangioendothelioma (EHE)
EHE is an ultra-rare vascular sarcoma that can arise anywhere in the body. It is estimated that less than one per million people are living with this rare cancer.
EHE is an unpredictable disease that is often metastatic at the time of presentation. Most often appearing in the liver, lungs, and bones, overall survival varies widely depending on tumor location and disease progression.
With no standard treatment, EHE leaves many patients feeling isolated and uncertain about their future, often with poor health outcomes. The EHE Foundation is determined to transform EHE from a life-altering diagnosis into a treatable—and ultimately curable—disease.
Why EHE Awareness Matters
By raising EHE awareness, we shine a light on the urgent need for treatment options and accelerate research progress aimed changing lives.
Awareness leads to:
- Shorter diagnostic journeys
- Global scientific collaboration among researchers and clinicians
- Improved patient outcomes
- Expanded global advocacy and more cooperative projects
- Increased research funding
- Improved patient support both in everyday life and in the clinic
Take Action How to Spread EHE Awareness
As a Person Living with EHE
Your story matters!
- Email us to schedule a video call to capture your story
- Use this online form to capture your story.
- Tell us what you wish others knew about EHE, and we will share it.
- Download these printables to make your own social media post:
As someone living with EHE, you hold a uniquely powerful voice in raising awareness. When you share your personal experiences—your challenges, your resilience, and your perspective as someone navigating life with an ultra-rare cancer—you help others understand EHE.
Your voice brings visibility to a disease that few people have ever heard of. It humanizes the urgent need for research and treatment options, inspires compassion, and drives action. Stories like yours are what move people to care, support, and invest in change. By speaking up, you help accelerate progress—not just for yourself but for the entire EHE community.
As a Family Member, Friend, or Supporter
Give Generously
This April, we invite you to make a gift in honor of someone who has impacted your life, someone you love, or a champion of EHE. Your gift is a celebration of those who have and continue to influence our mission.
Share EHE on Social Media and In Person
Share patient stories and facts about EHE on social media and during in-person conversations. The more people who are made aware of EHE, the challenges patients face, and the urgent need for treatment, the more financial support we will have for EHE research.
These are easy ways you can demonstrate your commitment, spread EHE awareness, and make a big difference in an ultra-rare cancer.
EHE Awareness Month The Origin Story
EHE Awareness Month began with the vision of Julie Wahl, EHE Board Member Emeritus. Julie recognized that this little-known and under-researched disease needed far more visibility to drive meaningful progress. She planned to share her experience and that of her daughter, Laney, and encourage others to do the same. Her vision ignited a spark that has grown into a global celebration.
Thanks to Julie’s vision and the willingness of patients and caregivers to share their stories, EHE Awareness Month now brings together voices from around the world to educate, inspire, and spread the word about EHE.
We are deeply grateful to Julie for starting EHE Awareness Month and to those EHE Champions who have shared their stories and looked for every opportunity to highlight EHE in their community.
