Helpline 07939 046 030

iNForm Your Workplace

iNForm your Workplace

Reaching adulthood, leaving education and starting on the employment ladder can lead to a number of obstacles, particularly within the working environment, but it doesn't have to. People spend a huge percentage of each waking hour in work, and so it should be as enjoyable and profitable as possible, for all concerned, including those with NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN). This is why we have set up the iNForm initiative, so that we can help support as many employers and colleagues as possible to create the best possible environment for people with NF to work in. 

iNForm is a programme of information and on-the-ground support from Nerve Tumours UK. This will help you give the most effective support to employees with NF1, NF2 or SWN.

Our team of Specialist Nurses/Advisors are able to offer an advisory service for employers, who will most likely never have heard of NF, and will not be aware of how the condition may affect an individual. They can also host a half-day training session for human resources and other senior managers, especially if it is a much larger company and one, where there may be a number of employees with NF. Working with both the employer, their HR department, and the employee, will benefit all parties, optimising the work experience and work effort, and ultimately the employee and corporate goals.

If you need any help in this area, please contact us at info@nervetumours.org.uk to request a Workplace Information Pack, and to be put in contact with a regional community-based Specialist NF Nurse/Advisor, who will be able to help.

Workplace Equality

In addition to our iNForm programme, we work with umbrella organisations and researchers to support employee's specific needs in the workplace, as well as providing guidance on issues such as visible differences. Read more:

Guidance for individuals with a visible difference - this document summarises some common questions relating to disfigurement equality at work.

As a result of the Research on Workplace Equality, Dr Hannah Saunders, Research Fellow in Law at Queen Mary University, London has produced this guide on good practice for employers to make their workplace environments inclusive for people with a visible difference.

"In our project at Queen Mary University in London, we have been researching how employers can create workplaces where people with visible differences are treated fairly. We have interviewed both people with lived experience of visible difference, and HR / people managers. We used the findings from these interviews to draft suggested guidance for employers on how to create appearance-inclusive workplaces. After testing the guidance in focus groups, we’re really pleased that it is now ready! We hope this guidance will give employers some useful ideas, and will make a positive difference to workplace experiences. Thank you so much to Nerve Tumours once again for all your help with this project. "

– Dr Hannah Saunders

Helpful Charities & Organisations

The following can offer further support and specialised services that may be of benefit to you, as an employee or employer. They could also help individuals, looking for help with their rights at work, related to visible difference or disability.

Autistica

If you are a manager, Diversity & Inclusion Lead or HR expert, and you recruit and support autistic and neurodivergent people, register for updates and get access to the Employers Guide to Neurodiversity.

Visit their website

Scope

Scope is a national disability charity that campaigns to challenge and change negative attitudes about disability and provides direct services.
-

Visit their website

Shaw Trust

Whether you need help accessing education, finding and keeping the right job, developing your career, or you want to get healthy and well, Shaw Trust can help you.
-

Visit their website

Mind Charity

Mind provide advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding of mental health.

Visit their website

Equality Advisory Support Service (EASS)

A government-funded helpline which assists individuals on issues relating to equality and human rights, across England, Scotland and Wales.

Visit their website

Business Disability Forum

For employers, the Business Disability Forum offers advice to its member organisations.

Visit their website

Advice Local

This site has some information on specific topics, and a searchable map to find an adviser local to you. Many advisers on their database may be able to offer free advice and support, but always check whether the advice is chargeable before beginning.

Visit their website

The Law Society Find a Solicitor

You can find a local solicitor using the following tool on the Law Society website. However, this advice would usually be chargeable.

Visit their website

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