Thank you for donating!

You can donate using the following services.

Calling all NPC Patients & Families: your help is needed!

Posted: 03.04.24

Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help.  Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond.  

By taking a moment to support Jackson’s work, you will help him to accurately communicate your experience of NPC and its impact on your life. You can participate in less than twenty minutes by completing the questionnaires in the INPDR Patient Reported Database (PRD) prior to the deadline of 14th April 2024.

If you are already signed up to the PRD, you can sign in here:

If you are new to the PRD, you can learn more and quickly create an account here:

The following documents explain more about the project and who to contact if you have questions.

Thank you supporting further progress in NPC.