News: Advocacy

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Nicola is on the march

8 May 2021

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

30 April 2021

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

25 February 2021

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

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Mariana continues European engagement

31 January 2021

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

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Italy goes live!

30 January 2021

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

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EHE360 Conference: a worldwide first

30 January 2021

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

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New media sites launched

1 January 2021

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

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A Christmas campaign

10 December 2020

Allana Parker is happy to front an important campaign, andn in so doing, bring greater awareness of EHE

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

8 December 2020

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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A surprise for a mother

8 December 2020

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

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