Are you an adult or are you caring for an adult with a Niemann-Pick disease? Would you like to be part of our exciting new project involving iPads?
We have been very lucky to get some funding from the Big Lottery, as part of our Shaping our Future Together project, to extend our pilot iPad project to adult NP patients and their families. The aim of the project is to see how technology can help our members manage their disease. You could use your iPad to communicate with and send videos to our Clinical Nurse Specialist Laura or other healthcare professionals? Or perhaps you would use it to get in touch with Elizabeth our Families Officer for advice, help, or maybe just a chat? You might want to join our NPUK Facebook community? Or use an iPad for information and research? You could download apps that help you with your condition? And of course you can use your iPad to watch films, catch up on TV shows, listen to music, or play games with your family! It is entirely up to you…
In our pilot programme, with children and their families, we aimed to address the emotional issues of isolation and despair that so often accompany a diagnosis of a rare disease by providing access to information and support when it is most needed. This is particularly important when our community is spread across the UK and indeed the world.
When we evaluated the project, we found that families viewed iPads as an essential part of their daily lives and they were used in many ways including:
We are now looking for 35 adults to take part in this project over the next 5 years. In addition to your iPad, you will receive training and support on how to use it and iTunes vouchers to get you started so don’t worry if you have never used an iPad before. All we ask is that you have access to the internet to use your iPad. In return, we’d like to stay in touch with you to talk about how you use the iPad and what difference it has made to you and your family.
If you would like to take part in this project or would just like to know a more at this stage, please contact Louise at the NPUK office on 0191 4161207 or email@example.com