About The Neuro Foundation
The Neurofibromatosis Association was established in 1981 by families with NF to help others. It became a registered charity in 1982 and a limited company in 2000. In 2010 it changed its name to the Neuro Foundation.
Our Vision
Our vision is to improve the lives of those affected by Neurofibromatosis.
Our Mission
We are 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.
Our History
The charity started in 1982 and now operates out of a small administrative office in London using paid staff and some volunteers. This office acts as the support centre for the rest of the team scattered across the UK. The Neuro Foundation works directly with families, funding the NF Specialist Advisor network, a small group of hospital based professionals. The charity also produces written information in a series of fact sheets for families and professionals.
The charity is financed through the generosity of trusts, grant giving bodies, fundraising events, the membership and by the support of people like you, who use our services and visit our website.
We fund a national Helpline to answer questions from people who have recently had a diagnosis of NF, from doctors caring for their patients, teachers and other professionals working within the care sector.
Our Board of Trustees
Our Board is responsible for 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. The network has grown and developed both in terms of size and knowledge of NF and 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 0208 439 1234.
All Advisors are highly qualified professionals with a background in either nursing or social work. Working from a base within an NHS Trust and with strong links to the regional genetics centres, they link with the many other professionals involved in the care of anyone with NF. As well as providing emotional support and information to parents, families and individuals on the many aspects of NF, the specific role of the Advisor also includes:
- Time to talk about NF and what it means for the family or individual.
- Support to those who are newly diagnosed or in times of acute need.
- Ongoing contact if and when needed.
- Accurate and up to date written information about NF1 and NF2.
- Information on other organisations that may be able to help.
- Liaising with health, education and social services to ensure that the best practical help and support is available.
- Guidance on education problems, including talking to teachers.
- Providing information about events for children, young people and adults.
- Providing specific information for professionals.
The Medical Advisory Network
A group of leading Neurofibromatosis doctors who share a professional interest and knowledge of NF. 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.
The NF - Improving the lives of those affected by Neurofibromatosis