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 .
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 .
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. 😀
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
If only the same existed for FND,!!
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hasn't been told something along the lines of 'if you don't accept a conversion disorder dx your primary care will be withdrawn'.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.
Good morning
I suffer from a number of rare conditions fn1 being one of the but the list goes on now nfd I'm struggling today to even talk my head feels empty I can't even think what I'm trying to say to you writing this message so will cut it for now , stay well .
Hi LittleCook. I have NF1. I was diagnosed about 22 years ago.