In March, EHE Foundation was represented at two important meetings in Europe focused on sarcoma, rare cancers, and EHE research. These gatherings were invaluable opportunities to connect with clinicians, researchers, and fellow advocates working to improve care, deepen understanding, and advance progress for people affected by EHE. Executive Director Denise Robinson attended on behalf of the organization, helping ensure that the voice of the EHE community was part of these important conversations.
ESMO Sarcoma and Rare Cancers Congress
The first meeting was the ESMO Sarcoma and Rare Cancers Congress, held March 12–14 in Lugano, Switzerland. This international gathering brought together clinicians, scientists, patient advocates, and industry representatives from around the world to share knowledge and work collaboratively to improve outcomes for people living with sarcoma and rare cancers.
For the EHE community, the Congress offered several important takeaways:
Quality of Life Research in EHE
In a powerful session focused on quality of life and what matters most to patients, Caterina Simoes Padilla, PhD, presented findings from the EORTC Quality of Life Rare Cancer Study, including an analysis of the EHE subgroup. Her presentation highlighted the isolation, uncertainty, and psychosocial distress that many people living with EHE experience.
Research like this is important because it helps ensure that future clinical trials and cancer care more accurately reflect the realities patients and families face every day.
The Importance of Expert, Disease-specific Care
Another key takeaway came from Prof. Jean-Yves Blay, a global leader in EHE care and research, who reinforced the importance of disease-specific guidelines in improving patient survival. He also emphasized that these guidelines “should be used in reference centers.”
For clinicians treating EHE and for people diagnosed with EHE, this is an important reminder to consult the Experts’ Consensus on Management of EHE, which underscores the value of expert, multidisciplinary care.
Strengthening Advocacy
Patient advocates also participated in workshops focused on building knowledge, engaging in research, and strengthening collaboration with healthcare professionals. In one session, Pan Pantziarka, PhD, of the Sarcoma Foundation of America, spoke about the importance of building advocacy capacity by developing more informed, engaged, and passionate advocates who can effectively represent patient voices
Time Together as EHE Advocates
The Congress also created a valuable opportunity for EHE advocates to connect in person. Hugh Leonard of EHE Rare Cancer Charity, Andrei Ivanescu of EHE Italia Associazione Non Solo Laura ODV, and Denise Robinson of EHE Foundation spent time discussing shared priorities, challenges, and opportunities in EHE advocacy.
These conversations were a meaningful reminder of how important it is to learn from one another and strengthen relationships across the global EHE community. Time together like this is rare and deeply valuable. We all left feeling the same way: we need more of it! What a gift to spend this time together.
Reflecting on the experience, Denise shared, “This meeting highlights the importance of building strong global partnerships that strengthen our knowledge while working together with a common goal to improve patients’ lives.”
EHE Research Meeting in London
Following the ESMO Congress, a smaller EHE team gathered in London to review and discuss progress in a jointly funded EU-EHE research collaboration involving the Istituto Nazionale dei Tumori (INT) in Milan, the Royal Marsden Hospital in London, and the Institute of Cancer Research (ICR) in London.
Dr. Paul Huang of ICR graciously hosted the meeting, and Dr. Sandro Pasquali of INT joined Hugh Leonard and Denise Robinson for focused discussions on the collaboration’s translational research progress.
Why this research collaboration matters
This project represents an important body of work with the potential to shape future EHE science and help accelerate progress toward more effective treatments. Its goals include developing EHE models, identifying biomarkers of disease and treatment response, and improving understanding of treatment outcomes.
Together, these efforts are helping build a stronger foundation for future translational and clinical advances in EHE.
Dr. Silvia Stacchiotti and Dr. Robin Jones, the project’s lead investigators, continue to be extraordinary champions for people diagnosed with EHE and for the advancement of EHE research.
Looking back on the trip, Denise said, “It is important to be present, in person, and take time to share ideas and ask questions. We need to support one another as advocates, and we should support our researchers and clinicians. Everyone is busy, and having time to meaningfully discuss EHE with passionate people who are working hard for patients is some of the best time we can spend.”
Being present in rooms like these helps ensure that the voice of the EHE community is part of the conversation as research priorities are discussed, partnerships are strengthened, and ideas move forward.
We are grateful to the donors who make it possible for EHE Foundation to attend important conferences and meetings like these. Your support helps connect our community to the people and discussions shaping the future of EHE research and care.