H.E.A.R.D. Support Group  

Welcome to the
Halt EHE
thru Analysis, Research and Discovery
(H.E.A.R.D.)
Support Website.
 

NOTE - THIS SITE IS UNDER CONSTRUCTION

H.E.A.R.D. is a support group, originally established in 2004 to help people who have  Epithelioid Hemangioendothelioma (EHE).

Unfortunately, the world health dollar does not extend to such a rare cancer, so it is up to us to help each other.

Together we have a stronger presence to present to the medical profession, and to the pharmaceutical companies, and to the rest of the world.

Together, we have the strength to expand the knowledge, and treatment, for EHE.

Together, our voices will be HEARD!


Each of the following sections is a vital link in the overall EHE project.

 

The International HEARD registry has been recognised as a meaningful tool for EHE patients and doctors, and has been cited in medical papers for its valuable data. The information is provided by you, our members, and is accessible to everyone who contributes, as well as approved specialists – but other than that, it is a confidential database. Members provide data about their cancer journey, when diagnosed, what hospital, what medication, results of various procedures and medications, etc.  Members may then access the data base – see who else has used a particular drug, is being treated by a certain doctor, lives in the same area – or just scroll through the whole database.  The more members who provide information for this registry, the more valuable it will become. The E-team manages the Registry and can answer any queries you have about it.

The International HEARD Registry is located on this website. Click the tab on the top of this page or just click here.


Patient Crossroad is a data collection service run by .......?. Researchers, pharmaceutical companies, and healthcare providers can access large sets of patient-provided de-identified data, to speed research. They can see how many people have a particular disease and evaluate the urgency for investigation. It is essential that as many EHE patients as possible complete our specific EHE Patient Crossroad survey to show that EHE is not really as rare as many professionals think, and we want answers NOW!

Members are asked to complete 60 or so questions, and to provide an update once or twice a year. It is a strictly regulated database, accessible only to authorised personnel.

Click here to go to the PATIENT CROSSROAD - EHE website


CRAVAT (Center for Research and Analysis of VAscular Tumors) FOUNDATION is our education website. It provides the latest explanations and information about EHE. It includes notes on what research is being done, medical abstracts, an educational blog, and Q & A’s about EHE. It is a registered Not for Profit organisation aiming to raise funds for cancer research.

Click here to go to the CRAVAT FOUNDATION website

 

Facebook ...
Spiel about FB .....Group communication, discussions and support

 Click here to go to the Facebook EHE website


Research - Regardless of how much we EHE'ers talk amonst ourselves, we need to have specialists actually working on projects to try to find a solution to EHE. Dr Brian Rubin of Cleveland Clinic is currently testing and developing interventions
based on his extensive research and discoveries with EHE, and is currently working on the first targeted therapy for EHE. 

Click here to go to Dr Rubin's explanation of EHE on the Cleveland Clinic website

Also, we have a very important request: If you are an EHE patient and will be undergoing surgery in the near future,
please contact the office of Dr. Brian Rubin, Anatomic Pathology Department of the Cleveland Clinic at 216-445-5551
to see about contributing your tumor specimen to his important research. Thank you.

FINALLY - NO research can take place without the essential funds....

Click the tab on the top of the page, or just click here - to help fund a cure for EHE


Note - the information and opinions expressed herein are those of the author, who has no medical training. Refer to Disclaimer.





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