Information about EHE for Patients, Their Families, and Doctors
 
 

EHE Epithelioid Hemangioendothelioma

Cravat Foundation

 

The Center for Research and Analysis of VAscular Tumors (CRAVAT) is an IRS approved 501(c)(3) not-for-profit organization that raises funds to increase awareness of and harness research to address rare vascular tumors. CRAVAT works with patients, clinicians and scientists to develop effective treatments for Epithelioid Hemangioendothelioma (EHE).

pawel-czerwinski-2Y8ol_OBS1I-unsplash.jpg

Our Mission

The central purpose of CRAVAT is to provide, on an international level, ongoing support for people with epithelioid hemangioendothelioma (EHE), and enable research that can give them better treatment for better outcomes.

WE SEEK TO

gather, organize, and disseminate

to members of the public, including patients and physicians, scientific data about the genesis, progress and treatment of EHE. This cancer cause sickness and death in people both in the United States and around the world. CRAVAT hopes to offer support to those affected with these tumors, raise awareness among medical researchers and the public in general about EHE, fund basic research into the biology of EHE, and to help develop treatments.


WHAT IS EHE?

 
 

epithelioid hemangioendothelioma (EHE)

is a rare vascular tumor that is often characterized as between benign and malignant. It has an unpredictable clinical course... it is often indolent for years punctuated by periods of tumor growth. Because it is so rare, most doctors have no knowledge of it and patients very often experience a circuitous route to reach a final diagnosis, including many misdiagnoses or misinformation. We strive to rectify this situation. Fortunately, there have been recent strides in the understanding of the disease and CRAVAT is dedicated to providing the latest information and resources to EHE patients and their doctors. We will provide access to current medical advances and literature relevant to EHE necessary for state-of-the-art understanding for this rare and unusual disease. We also continue to raise funds for relevant, basic research.

 

WHY IS UNDERSTANDING EHE IMPORTANT?

Beyond being a very interesting disease, EHE has value for every cancer patient insofar as understanding it will lead to better treatments of EHE as well as other more common cancers.


The underlying genetic cause of EHE results in persistent activation of TAZ, or its paralogue, YAP, genes that are now known to contribute to much more common cancers

some cancers including; breast, lung, pancreas, colon, etc.

Learning to tame EHE would mean progress for all these other cancers. This makes EHE important as a model of pure, TAZ-driven cancer.

Most cancers result from an accumulation of many genetic mutations,

whereas only a single genetic change causes EHE.

Thus EHE is also an exemplar of so-called precision medicine since treatment can be targeted specifically for the underlying TAZ-CAMTA mutation and this can be further calibrated for each patient based on their DNA breakpoint sequence

Activation of YAP/TAZ is also associated with, possibly even a requirement for metastasis.

This means EHE is a very good model for the biology specific to the process of cancer cell metastasis.

Interestingly, while metastasis is often a harbinger of bad outcome in other cancers, wide-spread disease is common in EHE but often doesn't in itself affect survival. That makes for a much 'cleaner' model of metastasis since this occurs in isolation from clinical decline.

 

TO SUMMARIZE

CRAVAT is focused on two key items


RESEARCH

Rare cancers cumulatively account for over 20% of all cancers, yet only 5% of worldwide cancer research funding is allocated to them. As you may know, there has unfortunately been very little research focused specifically on sarcomas generally and EHE specifically. Not surprisingly, there are therefore even fewer answers. CRAVAT is attempting to change all that by helping bring basic scientists into the field of study.  


Education

Of course, finding a cure is paramount in our aim, but we also seek to provide an information source for all those who are suffering from EHE.  We want to be your source to learn as much as you can about EHE and to keep up-to-date with all that’s new in the field. This is information will be derived from  the medical literature, our personal experience, and the medical research community.