AllStripes is partnering with the Firefly Fund, the National Niemann-Pick Disease Foundation, Niemann-Pick Canada and Ara Parseghian Medical Research Fund to create a research database that will power multiple NPC research studies.
The first research project will focus on if early diagnosis and intervention result in better outcomes and quality of life for patients with NPC.
To move this research forward, we are looking for families of 30 sibling pairs with NPC willing to contribute their de-identified medical records. All data shared with researchers is de-identified, or anonymized, meaning no identifying information like name or phone number is shared.
Our hope is to utilize the data to advocate for NPC to be added to newborn screening programs.
AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to drug development research from home.