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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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Craig’s story

Craig describes his mosaic NF2 related hearing loss, and how a cochlear implant & hearing aids have changed his life

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George’s Schwannoma Story

George shares his experience of being diagnosed with a schwannoma and why he's lacing up for NF awareness.

Read More

JoJo’s NF1 Story

JoJo shares how her NF1 journey has affected her; how her pain and loss have become foundations of courage and resilience.

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Tristan’s Story: Hope & Resilience

Discover Tristan's NF1 story: Finding home, hope & the power of sport.

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10 mile walk for Lily

Read more about the 10 mile sponsored walk for Lily, organised by Claire, with her nursery team, family & friends taking part

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NF & Sport: Joy’s Journey

Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.

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Safiya’s NF1 Journey

Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.

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The Boy Who Played Cricket

Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.

Read More

Ella’s Story

Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.

Read More

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

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

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

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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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