The EHE Foundation joins the Chan Zuckerberg Initiative’s Rare As One Network

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4 February 2020

On 3rd February, The EHE Foundation, sister foundation to the EHE Rare Cancer Charity, was delighted and honoured to announce that it will receive a $450,000 award from the Chan Zuckerberg Initiative (CZI) to drive progress towards treatments and a cure for Epithelioid Hemangioendothelioma (EHE). The award recognizes The EHE Foundation as part of CZI’s Rare As One Network, a two-year program that provides $13.5 million in funding to a network of rare disease patient-led organizations. As part of CZI’s Rare As One Project, these grants are aimed at supporting and lifting up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases.

No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.

CZI will provide The EHE Foundation with funding, training, community mentorship, and capacity-building services to assist in establishing a network of researchers and clinicians, convening their community, and developing a research agenda.

We are incredibly grateful to CZI for their support and funding. The opportunity to be a part of the CZI Rare As One Project is game-changing in the rare disease world,” said Jenni Kovach, Board President of The EHE Foundation. “The knowledge of patients suffering from a rare disease is key to driving breakthroughs in research and treatment. The lack of resources and infrastructure to support such patient-led research has held progress back—but this program is a significant step forward in eliminating these barriers.

The EHE foundations have always recognised that patients are a powerful force in driving research for rare disease. Patients provide critical insights about their diseases and information that can fuel significant discoveries. And with rare diseases, it is creating the environment and infrastructure to allow the worldwide patient base to come together that is so important to creating the patient numbers needed to make any analysis meaningful. Being part of the CZI’s Rare As One Network will help us build on the foundation we have laid and allow us to learn from and work with other patient-led organizations to accelerate progress on rare disease together.

The EHE community world-wide extends deepest thanks to the Chan Zuckerberg Initiative for this game-changing award. And we want to thank The EHE Foundation team who worked so hard over several months, and whose professionalism, passion and dedication to the EHE cause were certainly key in securing this award.

For more information about CZI and the Rare As One Project, please visit www.rareasone.org .

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