July 21, 2025 | The International Niemann-Pick Disease Alliance is asking for the Niemann-Pick community’s participation in a study underway. The study is funded by Niemann-Pick UK and designed to capture the real-life experiences of individuals with Niemann-Pick type C (NPC) and their families/caregivers. The data collected will help researchers and clinicians better understand the condition, identify gaps in care and support, and strengthen the evidence base for future treatment development and advocacy.
The survey takes around 1 hour to complete—but responses are saved, so participants can pause and return at any time.
- Survey link: Qualtrics Survey | Qualtrics Experience Management
- Learn more and see who can take part: NPUK Funded Study: An investigation into the real-world experience of patients with Niemann-Pick disease type C (NPC) and their carers – NPUK
Every response counts. Just one hour of respondents’ time could make a lasting impact for other families, researchers, and the future of care.
Many thanks for your support,
Firefly Fund