Partners in Advocacy
Progress against ultra-rare cancer relies on partnership. The EHE Foundation works with sarcoma and rare disease organizations, research foundations, and funders who share our commitment to better outcomes for people affected by EHE. These relationships deepen our knowledge through shared learning, extend our reach, strengthen the case for research investment, and help ensure that an ultra-rare community is represented in the conversations that shape guidelines, policies, funding, and care.
Global & Multi-Institutional Initiatives
CZI Rare As One Network
CZI’s Rare As One project is a collaborative ecosystem where patient organizations share resources and knowledge to strengthen organizational capacities and missions. The program awarded the EHE Foundation a transformational grant in 2021 and continues to fuel growth through tools, capacity-building support, and training resources.
Global Genes
A global nonprofit organization dedicated to eliminating burdens and challenges of rare diseases by equipping rare disease advocates with the tools and training to lead communities and advance research, while expanding and strengthening the rare disease ecosystem.
Margie & Robert E. Petersen Foundation
Private family foundation which has contributed $4 million toward EHE research through gifts to both the EHE Foundation and Cleveland Clinic.
Rare Cancer Research Foundation
A nonprofit organization dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate deployment of promising therapies.
RARE Foundation
(Formerly EveryLife Foundation) A community of relentless advocates working to improve the quality of life for all people living with rare diseases by driving science-based legislation and initiatives that accelerate treatments and diagnosis.
Sarcoma Alliance
An international nonprofit organization that strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education, and support.
Sarcoma Foundation of America
A global pan-sarcoma advocacy organization committed to improving outcomes for all people diagnosed with sarcoma by advocating for increased sarcoma research funding and offering programs and services for people affected by sarcoma.
Sarcoma Patient Advocacy Global Network
A global network of sarcoma patient advocacy organizations, including over 60 member groups from 5 continents. Organizations unite to improve sarcoma patient treatment and care through information and support and by increasing sarcoma visibility among policymakers and the public.
Global EHE Advocates
The EHE Foundation is proud to work with independent EHE advocacy groups in the United Kingdom, Australia, Canada, Italy, and Germany. Together, we build knowledge, amplify the voices of those living with EHE through advocacy, and work to improve outcomes for all people diagnosed with EHE.
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