Content tagged with: Advocacy

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Nicola is on the march

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EHE patient and transplant recicipient, Nicola Henderson, decided she has had enough of lock down. Fully vaccinated, Nicola set out on a long walk to combat the stress and anxiety of the past 18 months.

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Rowing for research

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Tamzin Jones once again has led the way in raising funds for research while supporting a close friend diagnosed with EHE.

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Dr Rubin leads team that engineers EHE mouse model

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Dr Rubin's team present their EHE mouse which is an extraordinary analogue of the human form of the disease.

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EHE360 Conference: a worldwide first

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The EHE Foundation in the USA organises the first ever international conference focused entirely on EHE

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Mariana continues European engagement

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Mariana Coutinho, an EHE patient in Portugal, continues to grow EHE awareness in Europe

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New media sites launched

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EHERCC launches Facebook, Twitter and Instagram social media sites to support EHE patients in the UK.

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Italy goes live!

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Italy launches the first EHE not-for profit in Europe.

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A surprise for a mother

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Conor and his friends combine to raise funds for EHE research, and support Conor's mother in the process

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2021 Wall Calendar is a great success

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Anna Wydro and EHERCC produced the first EHE wall calender which was purchased by suporters all over the world, bringing greater awareness of EHE while raising funds for EHE research.

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ESMO (European Society of Medical Oncology) holds major EHE event

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ESMO held a virtual meeting to develop Consensus and Guidelines for EHE Treatment. Bringing together over 90 clinical and research specialists, this was the single largest gather of EHE-experineced professionals ever held.

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