iNForm Your GP
Government directive - Corona Virus update - Some of our patients with more complex NF1/ NF2 and Schwannomatosis will fall into the clinically vulnerable or extremely clinically vulnerable patient group. If this is the case please register your patients on the following link.
Letter to your GP
Neurofibromatosis is not well known, one of the consequences of this is that support and medical care for people with nerve tumours and their families is often patchy and/or inadequate. This is particularly harmful in the NHS, for example. Whether you are supported by a Specialist Neurofibromatosis Nurse depends on a postcode lottery.
We would like to build awareness and support among GPs and others involved in the care of those diagnosed with the condition, by providing them with the necessary education surrounding NF. This in turn will benefit the NF community and raise awareness.
Download the “Letter to your GP” and pass this letter on to anyone who is professionally involved in the care of those diagnosed with the condition, but who might not be fully informed, or a specialist in the field looking after NF patients. Tell them to get directly in touch with us for more information or to copy and pass it on to someone who is affected by the illness and tell them to contact us. Additionally, the Annual Review Guidelines for NF1 (Best Practice) will give your GP further guidance and information.
If you would like more info then please contact firstname.lastname@example.org