Initiatives & Consortia
Advancing Research, Driving Collaboration
EHE Foundation actively participates in and supports global scientific initiatives and consortia to benefit EHE patients. Each interaction supports our mission by raising awareness about EHE, driving collaboration to accelerate progress, and advancing research that aims to improve lives.
Global & Multi-Institutional Initiatives
The PUSH Platform (Pushing Ultra-Rare Sarcoma Beyond Hope)
International collaboration of clinicians, scientists, advocates, and non-profit organizations working to build evidence to accelerate treatments for people with ultra-rare sarcomas.
EMA/EORTC Multi-Stakeholder Workshop
Workshop convening clinician-scientists, patients, non-profit organizations, and regulators to discuss treatment development for ultra-rare sarcomas as a model for ultra-rare cancers.
CZI Rare As One Network
Collaborative ecosystem where patient organization leaders share resources and insights to expand capacity to further organizational 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.
XCures Observational Study
Platform gathering real-time, deidentified data from medical records of people with EHE to identify promising treatments.
SARC
Sarcoma Alliance for Research through Collaboration (SARC) is a nonprofit organization dedicated to developing and supporting research to prevent, treat, and cure sarcomas; sponsors clinical trials for pediatric and adult sarcomas.
IAMRARE Registry Platform
National Organization for Rare Disorders (NORD)’s natural history patient registry platform created with input from FDA, NIH, patients, and experts.
Rare Cancer Coalition
NORD program that unites rare cancer advocacy organizations to collaborate on shared community issues.
ASCO
American Society of Clinical Oncology (ASCO) is the world's leading professional organization for physicians and oncology professionals caring for people with cancer. At the Annual Meeting, clinicians, scientists, and advocates gather to share and discuss the latest advancements in cancer care.
ESMO
European Society for Medical Oncology (ESMO) is the European reference for oncology education and information. ESMO’s core mission is to improve the quality of cancer care, from prevention and diagnosis to palliative care and patient follow-up.
CTOS
Connective Tissue Oncology Society (CTOS) is an international group of physicians and scientists with a primary interest in the tumors of connective tissues (sarcomas), advancing patient care and knowledge of tumor biology through research.
AACR
American Association for Cancer Research (AACR) is the first and largest cancer research organization, dedicated to accelerating the conquest of cancer through research, rapid dissemination of findings, science education, and advancing understanding of cancer worldwide.