“The patient perspective on sirolimus for epithelioid hemangioendothelioma (EHE): results of a community survey highlighting the importance of equitable access to treatments” was published on February 25, 2024, in the scientific journal Frontiers in Oncology.

In early 2023, EHE patient advocates surveyed the global EHE community to gain patients’ perspectives on sirolimus to generate information that would support ongoing dialogue with regulators and increase the available evidence regarding patients’ experience with sirolimus treatment and treatment access. This undertaking was primarily driven by The EHE Foundation, from the USA, and the EHE Rare Cancer Charity (UK).

Today, sirolimus is commonly available off-label to EHE patients in the United States and some other regions; however, this isn’t true in all countries where off-label prescriptions are not allowed. EHE clinical experts and patient advocates have been engaged with the European Medicines Agency (EMA) with the goal of gaining regulatory approval of sirolimus for the treatment of EHE, ensuring patients have equitable access to an effective EHE treatment.

The EHE Foundation is grateful to patients and caregivers who contributed to this important survey. And, we are grateful to the co-authors and reviewers for their significant contributions, enabling patients’ perspectives to be shared. The patients’ voice continues to inform our work to find treatments and a cure for EHE.