Patient registries are important within disease communities to gain knowledge and insight into disease processes, improve research and to improve diagnosis, treatment and care of those with certain diseases. This is particularly important with ultra-rare diseases such as Niemann-Pick diseases.
Please consider joining the International Niemann-Pick Disease Registry (INPDR) and share your experience of living with Niemann-Pick disease to support these advancements.
Niemann-Pick Canada has partnered with INPDR to support recruitment of patient enrollment in this registry across Canada.
To learn more, please visit their website https://inpdr.org or reach out to Niemann-Pick Canada directly should you have any questions or need support to enroll.