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Raise £265,000 for the 26,500 people in the UK with NF!

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Donate to Support the 26, 500 people with NF in the UK  

There are currently more than 26,500 people with NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN) in the UK, and each one of our Specialist NF Nurses already looks after busloads of patients. But, we need your help, now, to both maintain these existing services and to expand further, to all corners of the UK.

There is no cure for NF, but it makes a great difference to a person's quality of life if they are provided with adequate and effective support and care, from birth onwards.

Any size of donation will make a real difference:

  • £10 funds a Schools Advisory Information Pack
  • £25 funds Nerve Tumours UK platforms & e-newsletters, essential updates for the community, for one month
  • £60 funds an initial and follow up call from the National NF Helpline
  • £145 funds a School Advisory Meeting with parents & associated medical practitioners
  • £150 funds a Home Visit, crucial for newly diagnosed de novo cases
  • £1000 funds a part-time Specialist NF Nurse for approximately one month

These are some guidelines on how you can help - we are grateful for any donation and support

Nerve Tumours UK is fully dedicated to the health and well-being of our community. We believe in equal opportunities for all, and people with NF should be given the correct support to achieve their potential.

"It is only by raising understanding and awareness that we will be able to meet our goals of providing first class support to those who need our services"

– Karen Cockburn, Charity Director of Nerve Tumours UK

Would you rather donate by post?

There are various ways you can donate. One-off, as above, or if you would like to donate a custom amount this must be done separately through our online shop via the donate button above. We can only accept donations (or a combination) of either £5, £10, £20, £50, or £100 through our online shop. 

Donate £5 on a Monthly Basis
Five pounds a month, twenty-five doctors supported per year.

Our Neurofibromatosis Medical Guidelines are sought by even the most experienced doctors and specialists. Your donation allows us to continue providing with these cruicial guidelines, that have been vetted by the some of the worlds leading consultants. Five pounds could be the difference between someone’s local GP not recognising Neurofibromatosis, or catching it early and potentially minimising the impact of the condition. By making this a monthly donation, your impact will be that much more, and you can help affect that many more lives.

Donate £10 on a Monthly Basis
Provide crucial information for twelve newly diagnosed people.

Information is crucial at the point of diagnosis. All people with Neurofibromatosis know what it is like to feel overwhelmed. Most, if not all patients won’t know what it means for their future. After someone is newly diagnosed, information and reassurance are vital. Based on a year’s worth of your monthly donation, your gift would impact the lives of twelve individuals or families who have been newly diagnosed with Neurofibromatosis.

Donate £20 on a Monthly Basis
Fuel crucial Neurofibromatosis clinics and support sessions.

When someone first sits down with one of our Specialist NF Nurses, it’s an important moment. It’s the beginning of a new, formative relationship that could one day, have a transformational effect on the lives of the family or individual. These meetings can be key to a patient’s life and development- and based on a year’s worth of your gift, your donations would pay for the equivalent of a specialist first consultation providing crucial reassurance, guidance and direction. That is a very real impact, that many people who have received support have cited as incredibly reassuring.

Donate £30 on a Monthly Basis
Provide 1.5 Days worth of our Neurofibromatosis Helpline’s confidential support.

It is incredibly difficult to truly convey the importance of our Helpline. It plays a crucial role in making our support services readily available. Our specialists are trained to provide accurate, considered, non-judgemental advice and support in accordance with guidance from some of the top Neurofibromatosis consultants and experts in the country. Based on a year’s worth of your donation, you would fund 1.5 days worth of our helpline. This amazing contribution would allow us to provide a crucial first point of contact to many who need it, who are not covered by our regional NF Nurses, and provide vital information and referrals.

Donate £50 on a Monthly Basis
Eight home visits mean eight lives improved.

It’s hard to describe to anyone who’s never needed specialist support how important information can be. Long nagging questions get answered. Progress gets made. Reassurance can fix a lot of life’s ailments (though not everything), and even when our concerns aren’t able to be truly fixed; information is the first step on the road to regaining your life. A year's worth of this donation would allow us to fund the equivalent of over one hundred people’s first information packs as they seek that ever-crucial support.

Donate £100 on a Monthly Basis
One hundred pounds per month means one hundred and twenty people informed.

It’s hard to describe to anyone who’s never needed specialist support how important information can be. Long nagging questions get answered. Progress gets made. Reassurance can fix a lot of life’s ailments (though not everything), and even when our concerns aren’t able to be truly fixed; information is the first step on the road to regaining your life. A year's worth of this donation would allow us to fund the equivalent of over one hundred people’s first information packs as they seek that ever-crucial support.

£5 £10 £20 £30 £50 £100

Donate £5
Five pounds allows us to support five doctors.

Even Doctors need guidance.We often take the knowledge, experience and wisdom of our GPs, Consultants and Doctors for granted. The truth of the matter is, even Doctors need support and advice regarding best practice. Your donation allows us to continue providing crucial Neurofibromatosis Medical Guidelines, that have been vetted by the some of the worlds leading consultants. Five pounds could be the difference between someone’s local GP not recognising Neurofibromatosis, or catching it early and potentially minimising the impact of the condition.

Donate £10
Ten pounds will help us provide crucial information.

Information is crucial at the point of diagnosis. All people with Neurofibromatosis know what it is like to feel overwhelmed. Most, if not all patients won’t know what it means for their future. After someone is newly diagnosed, information and reassurance are vital. Your donation helps us fund information packs, support services, medical advice and much more, to do just that.

Donate £20
Twenty pounds funds initial support sessions for people with NF.

When someone first sits down with one of our Specialist NF Nurses, it’s an important moment. It’s the beginning of a new, formative relationship that could one day, have a transformational effect on the lives of the family or individual. These meetings can be key to a patient’s life and development- and your donation would pay for the equivalent of a specialist first consultation providing crucial reassurance, guidance and direction.

Donate £30
Provide an hour of safe, confidential support.

A lot can happen in an hour. This is especially true of the conversations with the Neurofibromatosis Helpline Specialist Advisors. Our Neurofibromatosis Specialist Advisors are experts in Neurofibromatosis and patient care. They provide accurate, considered, non-judgemental advice and support in accordance with guidance from our Medical Advisory Board. Our helpline reaches areas where our Specialist Network do not yet cover and is the first port of call for those seeking support. Your donation of £30 effectively pays for an hour of this service, and that hour could change someone's life.

Donate £50
The value of school visits can’t be underestimated.

Schools, despite meeting all standards expected of them have a difficult job keeping up with the care of children with special requirements. When a condition such as Neurofibromatosis is relatively unknown, the value of a Specialist visiting the school is of huge importance. Our Specialists, inform and guide the staff to better their care for children and teenagers with Neurofibromatosis. Your generous donation could help towards the cost of a school visit from a Specialist NF Nurse. Offering a better future for children living already complicated lives through our specialist support services.

Donate £100
Half a day of consultations, a life’s worth of impact.

It’s hard to describe to anyone who’s never needed specialist support how important those moments are. Long nagging questions get answered or at least looked at. Worries and myths get laid to rest and dispelled. Even when all of our concerns aren’t fixed - as is all too often the case, the reassurance of having the expert help and support is incredibly important and provides much-needed reassurance. Your donation would be equivalent to funding a half day of one of our Specialist NF Nurse’s day, which would, in turn, hold you responsible for some life-changing advice and support.

£5 £10 £20 £30 £50 £100

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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