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NF Patients Community Day

09 September 2022

Save the date!

Video by NF Patients for Prof. Gareth Evans and Prof. Rosalie Ferner

 

The NF Patients Community Day takes place on Sunday 9th October 2022 at the Mercure Manchester Picadilly Hotel.

The event is organised by NF Patients United, with Nerve Tumours UK, NF2 Biosolutions and CTT supporting and participating in the day's programme of events.

This day is dedicated to NF patients and family members, who can learn about NF1, NF2 and Schwannomatosis, available health and social services, as well as connect with other people affected by NF.

It would be great to meet you in person on the day.

Updated programme and timeplan, subject to change

Morning sessions

Afternoon sessions

Limited places to attend in person - registration closes tomorrow

Register to attend in person

Register to attend virtually

 

Virtual registration

Video by NF patients

Part of the programme will be to honour Prof. Gareth Evans and Prof. Rosalie Ferner

for their lifetime achievements working in the field of Neurofibromatosis and Schwannomatosis.
NF Patients United would like to surprise both Prof. Gareth Evans and Prof. Rosalie Ferner with a video collage from NF patients.

Please help us by recording and sending us a video: here are some ideas and suggestions:

Describe Gareth Evans / Rosalie Ferner in one word!

What is the best character trait of Gareth Evans / Rosalie Ferner?

How did Gareth or Rosalie help you, or change your life?

What would you like to say to Gareth or Rosalie?

or you can simply say a few words of thanks, it's your video and entirely up to you!

Maximum 2 minutes 30 seconds in total

Please record the video horizontally ie hold your phone sideways - Please see attached PDF for video specifications and consent form.

Please note that ALL videos are needed by Sept 25th. 

If you are submitting a video, please also complete the consent form below and send it to us with the video at info@nervetumours.org.uk 

Please contact us if you have any questions: info@nervetumours.org.uk.

NF Patients Video Instructions & Consent Form

Download

Specialist NF Nurses

Our Specialist NF Nurses are here for you! See if there is a Support Specialist in your area

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Social Media Support

Find out more about the support available on social media here:

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Research

Find out the latest NF research studies and how you can get involved

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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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Prof. Ellen Denayer, University Hospital Leuven

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

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Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

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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

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Gareth Evans, MD, University of Manchester, UK

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

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Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

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

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

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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

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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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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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