Do you suffer from nf1 or 2

[Littlecook]

Good evening friends

I was wondering if anyone suffers from the rare condition NF1 OR NF2 it would be lovely to chat to anyone who suffers from this condition and to see if we can help each other in anyway we can .

[210272]

Hi Littlecook,

There are some really good rare conditions groups on Facebook and I can recommend the Rare Revolution Magazine community group and the Global Genes group. Beacon for Rare Diseases are great, too. 😀

[210272]

Hi again, Littlecook - I just saw this on Facebook and thought it might be of interest to you 😀

The Nerve Tumours UK network of Specialist #NF Nurses & Advisors (bit.ly/3CX8BKr) is based within NHS Trusts around the UK. They work with individuals, families, medics, schools & others to provide vital support.

Contact them via the Helpline: 07939 046 030 bit.ly/3sJgYE6

[Shimmyaway in reply to 210272]

If only the same existed for FND,!!

[210272 in reply to Shimmyaway]

Indeed although since FN(C)D is thought to be a rare condition (by some drs) there are lots of resources/in person meetings etc available. Not that I've ever met anyone with FN(C)D at a UK rare conditions event although it's rare that I attend one and *don't* meet someone (usually female, but not always) who hasn't been told something along the lines of 'if you don't accept a conversion disorder dx your primary care will be withdrawn'. Sigh.