In 2017 and 2018 our EHE Group engaged with a research team led by Dr. Marije Weidema at the The Radboud University Medical Center in the Netherlands, who were keen to try and perform a 'Health-Related Quality of Life' study of EHE patients across different countries. They were excited to try and see if they could complete this type of study for such a rare disease. The research team hoped to get 100 participants. Some people said they would not achieve it, but thanks to the great support from so many EHE group members, they surpassed their goal of 100 participants, and achieved 114 in total from 20 different countries!!
The paper has now been completed and published, and was posted at the ESMO 2019 conference. Entitled: “Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy”, the paper can be found at: