National Lottery Community Fund Supports Innovative Project to Amplify Patient Voices Across Wales
We are delighted to share some really positive news… we’ve just been awarded funding by the National Lottery Community Fund to deliver an exciting 12-month Wales-based communications programme for people affected by Niemann-Pick diseases!
Living with a rare disease like Niemann-Pick can often feel isolating. Many families struggle to find reliable information, understanding from schools or healthcare professionals, and real connection with others who truly “get it”. This new project aims to change that by putting the voices of those with lived experience right at the heart of everything we do.
Inspired by our recent successful pilot programmes — where NP families got involved in a very “hands-on” way with the development of our creative communications — this funded project will allow our small charity to achieve so much more over the coming year.
This project will enable us to:
- Co-produce high-quality, accessible video resources that are genuinely shaped by lived experience
- Support patients and families to confidently share their personal stories covering diagnosis, daily life, education, symptom management, and wellbeing
- Reduce isolation by creating opportunities for peer collaboration and genuine community connection
- Build valuable skills in storytelling, filming, and digital editing — opening new pathways to volunteering, employment, and further training
- Share the finished videos widely with families, schools, healthcare professionals, and partner organisations to raise awareness both in Wales and internationally
- Co-produce accessible video resources shaped by lived experience
- Support patients and families to share stories on diagnosis, daily life, education, symptom management, and wellbeing
- Reduce isolation through peer collaboration and community connection
- Build skills in storytelling, filming, and digital editing, opening pathways to volunteering, employment, and further training
- Share finished videos widely—with families, schools, healthcare professionals, and partner organisations—to raise awareness internationally
We are incredibly grateful to the National Lottery Community Fund for believing in our work and providing this vital support. Their funding makes it possible for us to create meaningful, lasting impact for the Niemann-Pick community across Wales and beyond.
Watch this space!
Over the next 12 months we will be regularly sharing updates, behind-the-scenes moments, and of course the powerful videos created through this programme.
Would you like to get involved?
If you or your family are affected by Niemann-Pick diseases and would like to take part in storytelling, video creation, or skills workshops, we would love to hear from you. Please get in touch via email at info@npuk.org.
We can’t wait to get started and bring more patient voices to the forefront!