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NF Said

05 February 2021

Daisy is taking on a 38-mile running challenge for her sister Millie who was diagnosed with NF Type 2 roughly two years ago, after a number of misdiagnoses. She wants to run one mile for each person who is diagnosed with NF Type 2 each year – a self-proclaimed non-runner she will be lacing up her running shoes throughout the month of February to raise funds in support of her sister.

Daisy and Millie are best friends and despite a five-and-a-half-year age gap, they both have a love of netball. Millie’s Neurofibromatosis has knocked her confidence recently but her sister Daisy was there to pick her up.

“I wanted to build her confidence so dropped down teams so I was able to be on the court with her at the same time, it didn’t take a lot for her to get back into the swing of things.”

Daisy wants to raise awareness of NF Type 2 so more people understand the difficulties and challenges people with Neurofibromatosis face in their day to day life. 

Help support Daisy on her running challenge

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Talking about Neurofibromatosis A Guide for Teens

A new brochure aimed at helping teens with NF has been released by St Louis hospital. Find it here:

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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Masterclasses in NF: Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

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OT Sabine Koinig

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Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

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

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Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

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Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

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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.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

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.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

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Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

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

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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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