CREATING CHANGE TO OFFER HOPE + SAVE LIVES

 

WHO WE ARE

THE EHE RARE CANCER FOUNDATION AUSTRALIA IS A NATIONAL NOT-FOR-PROFIT HEALTH PROMOTION CHARITY WITH DGR STATUS. WE WORK IN PARTNERSHIP WITH OUR SISTER CHARITIES IN THE UNITED STATES AND THE UNITED KINGDOM AS PART OF A GLOBAL MOVEMENT DEDICATED TO ADDRESSING THE NEEDS OF PEOPLE AFFECTED BY EPITHELIOID HEMANGIOENDOTHELIOMA (E.H.E.) - A RARE CANCER DIAGNOSIS.

OUR MOVEMENT RAISES VITAL FUNDS TO SUPPORT AN INNOVATIVE INTERNATIONAL RESEARCH PROGRAM COMPRISING WORLD CLASS DOCTORS AND SCIENTISTS AND OFFERS PATIENTS AND FAMILIES SUFFERING FROM THIS FREQUENTLY AGGRESSIVE AND LETHAL CANCER, HOPE FOR IMPROVED DISEASE MANAGEMENT, TREATMENT AND A CURE.

THE EHE RARE CANCER FOUNDATION AUSTRALIA WAS ESTABLISHED IN 2015 BY AUSTRALIANS WITH E.H.E.  OUR VISION IS TO EFFECT POSITIVE CHANGE ON THE CARE AND QUALITY OF LIFE OF E.H.E. PATIENTS, PRESENT AND FUTURE, SO THAT THEY MAY Just Live.

 

WHY WE DO WHAT WE DO

Around the world, the statistics tell us that more action is needed to tackle rare cancers. With rare cancers accounting for more than 20% of incident cancer diagnoses and for 30% of all cancer deaths including 95% of cancer deaths in children under the age of 15 each year, the need for change is urgent.

Poor Screening + Diagnostics

Unlike the advancements seen in common cancer care over the past 25 years, rare cancers have not seen improved screening and diagnostics. Consequently rare cancer patients are often misdiagnosed and face long delays before the correct diagnosis is achieved, which can result in missed opportunities for life saving intervention.

Limited Medical Expertise + Treatment Options

The majority of people diagnosed with a rare cancer generally consist of very small and varied population groups. Large randomised clinical trials needed to support evidence-based treatment options for their cancer type are therefore nonexistent. As a result, they receive fewer treatment options, or treatments received rarely match their cancer and they are more likely to die of their cancer.

Lack of Funding to Support Required Research

Research funding to help address these shortfalls remains disappointingly and disproportionately low. Of research funding directed to particular tumour types in Australia, more than 85% is directed toward just five common cancer types (prostate, bowel, breast, melanoma, lung) and hematological malignancies, with only 2% being directed to rare cancers which, altogether, comprise over 180 distinct tumour types.

We Make a Difference

There is a lot to be gained from investing in research on rare cancers, which have already proven themselves to play an important role in medical progress more generally. One group of rare cancers in particular, known as sarcomas, have been found to be very good models for the development of novel treatments for cancers. Of these sarcomas, E.H.E. is one which exhibits a specific genetic fusion.

“...discovery of the specific gene fusion associated with E.H.E. tumours was a very significant breakthrough that has enabled the development of cell-based biological E.H.E. models that have have enabled research that was previously not possible...

Dr Brian P. Rubin, MD, PHD - Leader, International Research Program”

Our movement exists to grow awareness, to establish sustainable funding for our international research program, and to continue to invest in breakthrough research that, in turn, will improve the quality of life and chances of survival or rare cancer patients battling with epithelioid hemangioendothelioma. This is why patients, families, doctors, researchers and friends from across the globe unite and support us.