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Christmas Message from the Nerve Tumours UK team

13 December 2023

Dear Friends & Supporters,

I hope you are all keeping well, and looking forward to the Christmas festivities.

It has been another busy year for the charity, one in which we were sad to say goodbye to some members of the team, but also one in which we welcomed some new faces, and we were especially delighted to introduce a brand new post. And, we hope to be able to continue growing the team in 2024. As I have always stressed, the core function of the charity remains the funding of the network of regional nurses. 

We have been working on expanding our website over the last year. After launching the GP’s App, we have now introduced a medical hub for allied healthcare professionals, and we are in the process of launching a Progressive Web App, so all of our information will be readily available at your fingertips. The App will officially be launched in the new year, followed by the integration of a ChatBot.

We have also run the second phase of our national awareness campaign across rail hubs, in May & November this year, accompanied by an online advertising campaign, and I have been delighted by the feedback from the NF community, both patients and healthcare professionals, and from the wider general public.

We introduced a week in the summer to raise awareness of NF2, as we feel it sometimes gets lost during the month of May, and we were delighted to be supported by the two national NF2 charities, NF2 Biosolutions UK & Europe and Can You Hear Us, promoting this event. 

Once again, a huge thank you goes out to all of our fundraisers and donors, who have helped to fund our services over the past year. And also to the teams from St. Mary’s in Manchester, Guys & St. Thomas’ in London and the Specialist NF2 Service based at Addenbrooke's Hospital in Cambridge. We hugely appreciate their continued collaboration and support for the charity.

Please remember that we are here to help you, either with medical questions directed to the helpline, or any other question that the head office team can help to sort. No question is ever irrelevant, so do not hesitate in asking. 

On behalf of the Trustees, the Specialist Nurses & Advisors, and the head office team here at Nerve Tumours UK, may I take this opportunity to wish you all a “Very Happy Christmas and New Year!”

With my very best wishes,
Karen

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Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

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Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

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Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

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Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

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Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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