EHE patients in Germany have been in communication with each other for many years, but have now decided that they [...]
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Patients in Germany launch new social media
EHERCC Blog
EHERCC Blog
Fighting for Emma
Kym contacted the EHERCC in July, reaching out for information about the disease as her twin sister, Emma, had been [...]
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European Research is under review
As many of our readers will already know, the EHERCC and The EHE Foundation have been jointly funding ongoing collaborative [...]
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EORTC Quality of Life Study for People Diagnosed with EHE
In April, the EHE Foundation began a collaboration with the EORTC (European Organisation for Research and Treatment of Cancer) to [...]
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Sirolimus approval/repurposing
The EHERCC and The EHE Foundation are continuing to engage with the European Medicines Agency (EMA) regarding the approval of [...]
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