Sharing Your Voice: New Research Opportunity in Niemann-Pick Disease Type C

Understanding the real-life experiences of individuals and families affected by Niemann-Pick Disease Type C (NPC) is essential to improving care, research, and future treatment development.

A new research initiative led by Janney Wang from the University of Sydney is aiming to do exactly that—by listening directly to the voices of people living with NPC, their carers, and their families.

This work focuses on capturing the everyday realities of living with NPC, including:

• The biggest day-to-day challenges faced by patients and families

• Experiences with current therapies and treatments

• Gaps in care or support systems

• Perspectives on what future treatments should prioritise

  
  

By contributing your experiences, you can help ensure that future research and therapeutic development are more closely aligned with what truly matters to the community.

Janney and her research team are inviting members of the NPC community to take part by sharing their perspectives. You can also connect directly with her to learn more about the project and its aims.

🎥 Learn more about the project: Verbal Business Card Patient - Janney | Videos & Movies on Vimeo

🔗 Connect with Janney:

Facebook link: Facebook

LinkedIn Link: Janney Wang | LinkedIn

Your voice is incredibly valuable, and your contribution can help shape a better future for those affected by NPC.

Please note: This study is shared for informational purposes only. The Australian NPC Disease Foundation (ANPDF) does not endorse specific research. Participation is voluntary, and we encourage you to review the survey information, including how your data will be used, before taking part.