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Lobbying

Help our message reach Parliament!

Neurofibromatosis is not well known, and one of the consequences of this is that support 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 MPs, which will then add strength to our advocacy to Government for the nerve tumours community.

Below is an example letter – the more you make the letter your own, particularly if you or a family member has Neurofibromatosis, the greater the impact will be.

You can find out who your MP is (and their contact details) at: