The Neuro Foundation (Neurofibromatosis Association) provides crucial support and empowerment and for those affected by Neurofibromatosis in the UK.
Neurofibromatosis is not limited to one group of people. Regardless of gender, age, ethnicity, sexuality, disability or wealth – Neurofibromatosis, if not catered for appropriately, can cause intense grief and isolation.
Neurofibromatosis can be uncompromising, painful and punishing without the right support network. As long as the condition is around, we will strive to provide better and more targeted support. Our Neurofibromatosis Helpline and support network is available to every region of the United Kingdom, and we endeavour to support those outside of the UK wherever possible, via this Helpline.
We are staunch believers in equal rights and opportunities for all. We welcome input from all external organisations, teams and supporters. We provide specialist, age-appropriate support for children and teens as well as adults.
The Neuro Foundation is the authoritative voice of Neurofibromatosis in the UK. We achieve this by providing first class information, support and advice; facilitating and promoting innovative research, and being an advocate for those with Neurofibromatosis.
The charity was founded in 1982 and now has its administrative office in South West London, where a small team of part-time staff are based, acting as the support centre for the rest of the team scattered across the UK. The Neuro Foundation works directly with families, funding The Neuro Foundation Specialist Advisor network, a small group of hospital-based professionals. The charity also produces written information in a series of factsheets for families and professionals.
The charity is financed through our membership, fundraising events, the generosity of trusts and grant giving bodies, and by the valuable support of people like you, who use our services and visit our website.
We fund a National Telephone Helpline to answer questions from people who have recently had a diagnosis of neurofibromatosis, as well as those living with the condition, doctors caring for their patients, and teachers and other professionals working within the care sector.
Our Board of Trustees
Our Board is responsible for the governance and the strategic direction of the charity. Membership of the Board is drawn from many walks of life to ensure we meet our agreed aims and objectives. Members of the Board give their time and expertise freely to the service of the charity, and we are grateful for their commitment.
The Specialist Advisors
One of the areas we are most proud of is our network of Specialist Advisors who are based within NHS Trusts around the UK. All our Advisors are highly qualified professionals with a background in either nursing, social work or occupational therapy. The network has grown and developed both in terms of size and knowledge of neurofibromatosis. The value of the network is demonstrated every day in the unique and specialised work of the Advisors with individuals, families, health professionals, schools, other voluntary organisations and a range of other professionals. To see if there is an Advisor in your area, please call 020 8439 1234.
The Medical Advisory Network
We are in constant contact with a group of leading Neurofibromatosis doctors who share a professional interest and knowledge of Neurofibromatosis 1 or 2. They collectively and individually advise the charity, act as a resource for the Specialist Advisor network and other less experienced doctors.
They advise the charity about medical research, ensure our information is accurate and up to date, and support some of our national events. We are grateful for their advice and support. They are our eyes and ears and can alert us to new developments within the international medical community working with NF.