Following the successful January workshop at the European Medicines Agency (EMA) in the Hague, Holland, we are pleased to now be able to update you concerning the second such workshop held on 24th May, again at the EMA offices in the Hague. Hugh Leonard from The EHE Rare Cancer Charity (UK) again attended the meeting while Denise Robinson from The EHE Foundation in the US participated by video conference.
Hugh Leonard explained
“On Friday we had our second workshop at the European Medicines Agency in Holland to talk about how we can improve drug approval for ultra rare sarcomas and other diseases. Our group was again led by Dr Silvia Stacchiotti. I had the chance to present on mobilising and accessing patients and their information, using the EHE story. People were genuinely impressed with what we have all collectively achieved for EHE. Denise Robinson also gave an excellent presentation, updating the workshop on the history of sirolimus involvement in treating EHE, including some of the data from our group’s sirolimus survey which was the subject of a scientific paper published in February. The meeting was very encouraging, with all participants, including the regulators from the EMA and FDA in the US, agreeing on many key points relating to the way forward. There is much more to do, and the next work shop will be at the end of this year or the very start of next, where we hope concrete decisions can be made that will really help us deliver new treatments for ultra-rare sarcomas.”
Reports and video recordings of both workshops are available now on the EMA website, using the following links:
Workshop 1: 12th January 2024: EMA and EORTC multi-stakeholder workshop on soft tissue and bone sarcoma | European Medicines Agency (europa.eu)
Workshop 2: 25th May 2024: Follow up EMA and EORTC multi-stakeholder workshop on soft tissue and bone sarcoma | European Medicines Agency (europa.eu)