Latest News

Information, help & support
for those who need it.

Latest News

Here you will learn of what is happening in the world of the NF Association Ireland. Check back regularly for news and updates.


Rare disease day is taking place on the 28th February, with the Irish event being held at Royal Hospital Kilmainham.

Entry is free but you must register at


Gareth Lynch is heading over to Scotland in April where he will be trekking Ben Nevis, the highest mountain on the British Isles. He is doing this in aid of NF Ireland as his 7 year old son Ben has NF1. He has set up a gofundme page to fundraise.

If anyone is interested in supporting Gareth you can make donations and read his story through the following page. Amazing work Gareth and good luck!


Some of our brave NF members will be doing a skydive at the end of April to kick off NF Awareness month in May. If anyone would be interested in joining them please get in contact with Katie at Everyone is welcome!

In the coming weeks we will also be posting how you can show your support to the team and help raise funds so make sure to check back for updates.


The VHI Women’s Mini Marathon will take place this year on Monday the 5th of June. We are always on the lookout for people to run for NF Ireland and this year is no different. We want to make sure NF is represented as it is a great opportunity to raise much needed funds and awareness. So please consider running for us and why not bring your friends and family along too. It can be a great day out with an amazing atmosphere around the city.

Applications open March 1st. If you are interested please let us know and we can provide you with shirts and sponsor cards.