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We’re Here for You, Our NF Community.

09 September 2020

Hello Everyone,

I just wanted to say a very big thank you to absolutely everyone, who has helped us to keep the charity running as usual: by their fundraising efforts; assistance and guidance; and also those who helped to keep up our spirits in the “virtual” head office, over the last six months. Members, supporters, friends, families, the NF medical teams at St Mary’s and Guys & St. Thomas’ and even our local MP! Thank you, to each and every one of you!

We are not sure what the next six months, or even the next year, will bring, but we’re here to take your calls and help where we can. This is a whole new territory for all of us, so please bear with us if things take a little longer, we will all get sorted in the end, but do let me know if there are any major issues, and we will try to help.

We are aiming to move back to the office in the next couple of weeks, a very different looking office as we will all be working behind screens, etc, and apparently you can no longer even share biscuits …….but it will be lovely to be back there with the team!

The shop distribution should return to normal, which is especially important as we will soon launch the sale of our Christmas Cards and other festive items! In the meantime, if anyone has any imaginative and inspiring ideas about how we can raise funds safely in this new, odd world that we live and work in, please do let the team know.

Please do continue to follow the Government guidelines and do take care.

With my very best wishes,
Karen

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Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

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Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

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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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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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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

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Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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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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