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The results are in for our Nerve Tumours UK film nominated at the Rare diseases film festival!

05 March 2020

Voting for the Peoples Choice Award at the Rare Film Festival 2020 has now closed and the results are in!

Unfortunately Nerve Tumours UK did not win but we are proud to have been selected and given the opportunity to spread the message for neurofibromatosis & schwannomatosis in the UK. We would like to say a huge thank you to the 260 people who voted for our film "Shine A Light on Neurofibromatosis"!

Congratulations to all of the participants and for anyone who hasn't seen our film yet you can check it out on our YouTube channel below.

Nerve Tumours UK film shortlisted at first ever rare diseases film festival!

Rare Disease UK as part of the Genetic Alliance is hosting the UK’s first ever film festival that is dedicated to raising awareness of rare diseases. 

Our entry "Shine A Light on Neurofibromatosis" has been shortlisted as potential winner of 'Best Charity Film' category. The festival had over 50 entries. The Awards Ceremony will take place on the 10th of February at Regent Street Cinema, at 6:30 pm. 

During the night the winner of all the categories will be announced. 

Nerve Tumours UK took part in the festival in order to raise awareness for those that are affected by Neurofibromatosis Type 1 and Type 2 and reach a wider audience. Please have a look at the video below. We are more than grateful to the Burbdrige family and Emily Owen for sharing their stories on camera. Feel free to share. 

"Making this film and raising awareness of NF Type 1 and NF Type 2 - specifically capturing the stories of those that are affected - was incredibly fascinating. Films should always have a strong narrative and being able to share their inspiring stories and their courageous journey through adversity, was both heart-warming and inspirational. "

– Phil K Matthew Film Director

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How To Use Lipspeakers – Support For Those Affected By Hearing Loss

Frances Harris at Bridge Lipspeaking shares how lipspeaking can help those with hearing loss or total deafness caused by NF2

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Living with Neurofibromatosis Type 1: An Anthropological Study

Get involved and share your story to help increase cross-cultural understanding and awareness of NF1

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Nimo’s NF1 Story

Read Nimo's incredible journey of coming to terms living with NF1 & how Nerve Tumours UK has changed her life for the better

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Read Georgia's inspirational Schwannoma story and how she had to fight for her diagnosis

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Voices of Visible Difference #YoureNotAlone Men’s Campaign

Two-thirds of men with visible difference are affected in their day to day life. Read more

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Childhood Neurological Conditions Survey

Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis

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We’re Here for You, Our NF Community.

A big thank you from Karen our Charity Director - your support has been amazing!

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Global Genes LIVE!

Join Global Genes September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.

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Shine A Light on Neurofibromatosis now streaming on The Disorder Channel

Find out how we are bringing NF Awareness to people's homes

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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: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

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Prof. Ellen Denayer, University Hospital Leuven

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

Masterclasses in NF: NF1 Dermatological Manifestations

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

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

Gareth Evans, MD, University of Manchester, UK

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

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

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

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

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

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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

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.

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

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Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

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Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

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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

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

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

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Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

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Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

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Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

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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Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK