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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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Shine a Light 2020 Success!

Check out some amazing blue buildings that took part in our Shine a Light On Neurofibromatosis 2020 campaign

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Sarah’s Story as told by her Father Clemence

Read more about Sarah's story and her Shining a Light on NF from home for World NF Awareness Day!

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Statement by Helen Tomkins our Specialist Neurofibromatosis Nurse UK

A statement on coronavirus by Helen Tomkins specialist Neurofibromatosis nurse in Devon & Cornwall

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Courtney’s Story

Read more about Courtney's NF Story and how she overcomes her difficulties

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No Laughing Matter

Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it

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Shine A Light on Neurofibromatosis 2020

Find out what we're up to for our Shine A Light campaign this year!

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Statement by Michael Fry our Chair of the Board of Trustees

The impact of the corona virus on the charity sector and Nerve Tumours UK's continued support to those affected by NF

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Find out more about an NF1, Plexiform Neurofibromas market research survey

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Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK

A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria

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

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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: 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

Thomas Pletschko, PhD, Medical University of Vienna, Austria

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

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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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