The EHE Foundation announced it will receive a $450,000 award from the Chan Zuckerberg Initiative (CZI) to drive progress toward treatments and a cure for epithelioid hemangioendothelioma (EHE), a rare vascular cancer diagnosed in about 20 individuals per year. The award recognizes The EHE Foundation as part of CZI’s Rare As One Project, a program that provides $13.5 million in funding to a network of rare disease patient-led organizations. 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-Chief Executive Officer 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 be providing 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 its 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.”
About The EHE Foundation
Founded in 2015, The EHE Foundation is an international patient advocacy organization dedicated to seeking treatments and a cure for EHE by increasing awareness, pursuing scientific research, advocating for patients and bridging information between researchers, providers, and patients. Through grassroots fundraising and the deep involvement of an emerging and tight-knit global community, The EHE Foundation has been able to jump-start promising research, bringing hope to anyone affected by EHE. For more information, visit www.fightehe.org.