Our activities
Read about our main activities and how they are helping us fight EHE.
Patient Support & Advocacy test
We advocate for patient support, public awareness, and government funding
Fundraising Activities
We support and promote an active fundraising programme to enable us to raise the moneys needs to fund critical research into EHE
Research
We fund critical research into EHE to develop and deliver new treatments and drug regimens
Critical initiatives
Find out more about three critical initiatives of our charity.
The UK National EHE Biobank collects blood, fluid and tissue samples from EHE patients across the UK to help drive and support EHE research.
In late 2020, over 85 sarcoma specialists came together in Europe to discuss and agree a consensus paper on the treatment and care of EHE patients.
The EHE Global Patient Registry empowers people with EHE to join together and contribute their data to improve our understanding of this ultra-rare sarcoma.
Meet the EHERCC Research and Medical Advisory Board
Our Research and Medical Advisory Board provides the Board of Trustees with critical advice, guidance, and clinical and research expertise in key areas. We are hugely grateful for the time and dedication they so readily give to helping us find new and better treatments for EHE.
Prof Brian Rubin
Prof Robin Jones
Dr Silvia Stacchiotti
Dr Oliver Pearce
Dr Robin Young
Dr Paul Huang
Visit the EHERCC Blog to read more about the great work so many people are doing to help find new treatments for EHE
Annual reports, quarterly newsletters, Charity documentation and much more, plus links to an extensive library of research and medical papers can be found in our EHERCC Library
