The NPRF raises money to invest in research and in funding trials of therapies to help treat this devastating condition.

Niemann-Pick C is a very rare, terminal, neurodegenerative disease.

What is the Niemann-Pick C?

  • Ultra rare. Less than 100 cases in the UK; 1,000 diagnosed worldwide.
  • Neurodegenerative. Slow loss of every day functions, including talking and swallowing.

NPC has been referred to as Childhood Alzheimers but equal numbers of adults are now being diagnosed.


NPRF Ball - 7th October 2017

The NPRF’s second Ball is to be held on 7th Oct 2017 at the Grand Connaught Rooms, which was where we held the first ball back in 2012. Included within the £95 ticket price is a welcome drink, three course meal and a disco.  Tables are for 10 people.


What is the NPRF?

The NPRF was established in 2011 by the parents of an NPC sufferer.  The sole objective is to raise funds to invest in research that can make a difference to today’s generation. A key goal is to spend as little on administration as possible to ensure that as much of what is raised can be used to fund research. Overheads are currently less than 1% of total funds raised to date.

Find out more about NPRF fundraising

We can send the latest information regarding Niemann-Pick research and fundraising opportunities straight to your inbox, simply register to receive our newsletter below:

Without awareness there is no funding, without funding there is no research, without research there is no cure, without a cure there is no hope.