How We Can Support You
If you are living with NF, at times you may need information and
support. We are the leading authority on the condition and have combined the day-to-day experiences of those living with NF and those working with them in order to provide a range of information leaflets for you to download, or you can contact us asking for the leaflets to be sent to you.
To see our range of information leaflets, please click here.
NF remains something of a mystery to many medical, social and educational professionals who may have never heard of the condition or supported someone with NF before. Therefore, we also have a range of information suitable for their needs.
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 Neurofibromatosis Association has taken reasonable care to ensure that the information contained in its newsletters, literature and web site is accurate. The Neurofibromatosis Association cannot accept liability for any errors or omissions or for information becoming out of date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.
The UK’s leading authority on Neurofibromatosis