Latest EHE News, Events & Research

SPAGN discussion panel on clinical trials in rare sarcomas

Strengthening Global Collaboration in Sarcoma: Highlights from the 2025 SPAGN Annual Conference

May 6, 2025

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 […]

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EHE Meetup in Washington, D.C.

EHE Foundation Hosts EHE Patient Meetup in Washington, D.C.

May 1, 2025

Five people living with EHE, representing three countries, gathered on Sunday, April 13, 2025, for lunch and camaraderie, marking the first-ever meetup of its kind in the United States. The EHE Foundation was in Washington, D.C. that same weekend to participate in the Sarcoma Patient Advocacy Global Network (SPAGN) Annual Conference, and put out the […]

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Rare Disease Day 2025: Shining a Light on EHE and the Power of Awareness

March 4, 2025

Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global movement to raise awareness, promote research, and celebrate the strength of those living with rare conditions. This year, February 28, 2025, marked another powerful opportunity to elevate voices from across the rare disease community. At The EHE […]

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The Pledge: Edition 39, Q4 – October-December, 2024

The Pledge: Edition 39, Q4 – October-December, 2024

February 25, 2025

Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe provide content including research news, patient and fundraising stories, and much more. Click here to view the most recent edition of the online EHE newsletter, The Pledge.

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PUSH meets with EMA

Ultra-Rare Pushes Forward at the EMA

February 15, 2025

On January 31, 2025, expert clinicians, researchers, and global advocacy leaders convened in Amsterdam, the Netherlands, to meet with the European Medicines Agency (EMA) and EORTC, exploring strategies to develop new treatments for ultra-rare sarcomas as a model for ultra-rare tumors. The discussion focused on lessons learned from efforts to secure regulatory approval for sirolimus […]

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EHE Research Roundtable

Research Roundtable: Advocacy in Action

February 11, 2025

In late January, 2025, EHE advocacy leaders from The EHE Foundation, EHE Rare Cancer Charity UK, and EHE ITALIA Associazione Non Solo LAURA ODV coordinated a joint meeting with expert clinicians and researchers in Amsterdam, The Netherlands. Stakeholders from Italy, the United Kingdom, and the United States reviewed progress on ongoing collaborative research programs and explored key research […]

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CTOS 2024 Highlights

Highlights from CTOS 2024

December 30, 2024

In November, Denise Robinson, Executive Director and Director of Research attended the CTOS 2024 Annual Meeting in San Diego, CA. The Connective Tissue Oncology Society (CTOS), is a professional medical organization that brings together multi-disciplinary clinician-scientists, translational researchers, and advocates from all over the world to advance the treatment of sarcomas. Many of the world’s […]

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The Pledge: Edition 38, Q3 – July-September, 2024

The Pledge: Edition 38, Q3 – July-September, 2024

November 21, 2024

Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe. provide content including research news, patient and fundraising stories, and much more. Click here to view the most recent edition of our online EHE newsletter, The Pledge.

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2024 Research Grant Awards

The EHE Foundation Announces Grant Funding of $307,400 to Advance Research and Find Treatments for EHE

November 20, 2024

We are pleased to announce The EHE Foundation’s 2024 Research Grants Program awards, totaling $307,400, as part of our ongoing commitment to advance our mission to find effective treatments and a cure for EHE. Made possible by 2023 Giving Tuesday gifts, these grants support novel translational research projects that aim to identify and accelerate the […]

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Michaela W.

Michaela’s Story

November 11, 2024

I was first diagnosed with fibrosarcoma in April of 2008 after severe pain in my brachial plexus, right side. At the time, I was 48 years old and teaching middle school. I had just finished a master’s degree a few years prior to my diagnosis and planned to teach until I was at least 62. […]

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