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Fundraising Pages Terms and Conditions

This Online Fundraising platform is owned and provided by Nerve Tumours UK (“we”, “our” or “NTUK”) and allows users to raise funds for, and to give donations, to NTUK. It cannot be used in connection with any other charity, or for any other charitable cause or purpose.

The use of the Platform is subject to the rules below, as well as our general Terms and Conditions that govern the use of any part of the Nerve Tumours UK website (together the “Fundraising”). In the event of any conflict between them, the rules below shall take precedence.

The Fundraising Terms may be amended from time to time, so you should check them regularly for any changes.

Use of Donations

  1. When setting up a fundraising page, users may be given the option of setting a fundraising “target”, which will be visible to anyone visiting that page. Please note, however, that once we have processed and confirmed receipt of a donation this money will be treated as cleared funds in Nerve Tumours UK account, whether the target is ultimately achieved or not.
  2. Please note that charities are only legally permitted to return donations in very limited circumstances e.g. where the donor lacks mental capacity. We therefore ask that you take care when entering your details when making a donation using the Fundraising Hub, as we may be unable to provide any refund once your payment has been processed. We do not charge a fee for processing refunds.

Gift Aid

If you are a UK taxpayer you are encouraged to claim Gift Aid when donating your own money to your fundraising page by completing the Gift Aid declaration which is available online.

If you pay in money to your fundraising page other than money you are donating to Nerve Tumours UK personally (e.g. cash from collections, family members, ticket sales and any activity where you get something in return for your money) you cannot claim Gift Aid.

Gift Aid can be claimed on individual donations that are made to Nerve Tumours UK offline. To claim Gift Aid each individual making a donation must complete a Gift Aid declaration confirming that they are a UK taxpayer and provide his or her name and address including post code.

Use of Fundraising Pages

If you are creating a fundraising page and would like to upload photos to it, please ensure that you are either the owner of the copyright in the photo, or you have the permission of the person who is. Similarly, if the image and/or text you would like to post features the name and/or likeness of any living person, especially where he/she has been diagnosed with a medical condition, you must get his/her consent before you do this. If the image and/or text you would like to post features the name and/or likeness of any person who has died, please get consent from a member of their family before you do this. 

We welcome and encourage users to customise messages on fundraising pages, and to leave comments when making donations. However, racist, sexist, obscene, defamatory, misleading or otherwise offensive or upsetting language and/or content is not permitted.

The following uses of the Platform are also prohibited:

  • posting or uploading any content or material that infringes someone else’s intellectual property or other legal rights, unless you have obtained the owner or relevant person’s consent first;
  • running any form of prize draw, competition or lottery, or offering any form of incentive to encourage people to donate through their fundraising page;
  • carrying out or encouraging any illegal or unlawful acts; and
  • sending junk or “spam” communications, or any other form of messaging or content for promotional or commercial purposes.  

Nerve Tumours UK is not responsible for the contents of any fundraising page on the Platform, nor do we necessarily endorse the fundraising activities referred to on any page. Whilst we do not actively monitor the Platform, if and when we become aware that a user has breached any of the terms of this section above, we reserve the right to edit or remove the offending message(s) and/or content, or to close the relevant page, without further notice at our sole discretion. Please note that donations will not be refunded in these circumstances.

Fundraising pages will remain open, and donations can be made through them, unless and until they are deleted by the page owner.

Personal Data

As access to all open fundraising pages on the our fundraising pages is unrestricted, and can therefore be seen by anyone, we advise users to avoid posting personal information about themselves or someone else (e.g. addresses, telephone numbers) when writing on a fundraising page.

All personal data that you are asked to provide when setting up a fundraising page and/or making a donation will be handled in accordance with our “Privacy Policy”.

We will also use your personal details for the purposes of sending you communications about our latest breakthroughs, campaigns and how you can help support our work where you have given your permission for us to do this when setting up a fundraising page and/or making a donation.

General

Whilst we make every effort to ensure that the fundraising hub is available at all times, circumstances outside of our control mean that we cannot guarantee that this will always be the case. Similarly, there may be occasions when we have to carry out maintenance or other work on the fundraising hub which may affect its functionality, or we may have to suspend the Platform altogether, but we shall try and keep this to a minimum.

In the event that any user breaches Nerve Tumour UK’s terms, we reserve the right to close their fundraising page (if applicable) and to prevent them from using the fundraising hub in future. Please note that any donations received will not be refunded in these circumstances.

The payment service providers we use in relation to this platform are regulated by the Financial Conduct Authority or other relevant EEA home state regulator.

If you have any queries about the use of the fundraising pages, wish to report any content or material that you believe is in breach of our terms, or to request a refund please contact .(JavaScript must be enabled to view this email address).

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

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

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

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

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

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

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

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

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

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

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

Masterclasses in NF: Surgery in NF2

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

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

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

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

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

Masterclasses in NF: NF1 Pediatric Management

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

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

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

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

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

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. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

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

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

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

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

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