From April 11–13, 2025, representatives of The EHE Foundation participated in the 15th Annual Conference of the Sarcoma Patient Advocacy Global Network (SPAGN), marking SPAGN’s first conference in the United States. The National Cancer Institute (NCI) co-hosted the event, underscoring the importance of international collaboration in sarcoma advocacy. Denise Robinson commented, “As a long-time supporter and now a new member of SPAGN, we were thrilled to join with other member advocacy organizations to elevate the voice of EHE patients on a global stage.”
Pictured: Martha Donoghue, FDA; Uchenna Iloeje, SpringWorks; Denise Robinson, The EHE Foundation, Silvia Stacchiotti, INT Milan; Bernd Kasper, Mannheim University Medical Center; Markus Wartenberg, SPAGN
Day 1: The Power of Collaboration
The conference began with a keynote by Dr. William Tap, Medical Oncologist at Memorial Sloan Kettering Cancer Center, emphasizing the transformative potential of collaboration between healthcare professionals and patient advocates. Subsequent sessions delved into precision oncology and the challenges of accessing research and treatment in low- and middle-income countries, featuring insights from Dr. Satish Gopal of the NCI’s Center for Global Health. A panel discussion on patient-partnered research highlighted the importance of involving patients through partnership with patient advocacy organizations in the research process to drive meaningful outcomes.
Day 2: Patient Data and Clinical Trials
The second day focused on the significance of patient data in research, with educational presentations on Patient Experience Data (PED) gathered from sources like global patient registries, patient-reported outcome tools, and surveys. Patient advocate and researcher Verena Loidl, PhD, presented findings from SPAGN’s Global Sarcoma Patient Diagnosis Survey, shedding light on the diagnostic experiences of sarcoma patients worldwide.
In a session exploring clinical trials, Silvia Stacchiotti, MD, shared progress of the PUSH Project (Pushing Ultra-Rare Sarcomas Beyond Hope), an important initiative supported by the EHE Foundation.
Denise Robinson, Executive Director & Director of Research for The EHE Foundation, provided insight into the patients’ perspective in clinical trials, highlighting how patient input should inform clinical trial planning and decision-making. Denise also contributed to a panel discussion (pictured above) that included members of SPAGN, the pharmaceutical industry, and Martha Donoghue from the FDA. The discussion focused on innovative approaches and the unique challenges in conducting trials for rare sarcomas.
Day 3: Empowerment and Youth Focus
The final day explored multidisciplinary approaches to sarcoma treatment, with presentations on improving the diagnostic journey, imaging, surgery, and radiotherapy advancements. A session on empowering patients showcased advocacy projects and initiatives to strengthen patient voices. The conference concluded with a workshop addressing the unique needs of children and adolescents with sarcoma, emphasizing the importance of tailored psycho-social support and specialty resources for younger patients.
Maggie Cameron, Director of Communications and Development at the EHE Foundation, and an EHE patient, said “Participating in the SPAGN Annual Conference provided unparalleled access to engage with the global sarcoma community, the NCI, pharmaceutical representatives, and the FDA, sharing insights and strengthening collaborations aimed at improving outcomes for those affected by EHE and other rare sarcomas. As a person living with EHE, I am thrilled to have my voice heard at this meeting.”