Firefly Fund is proud to partner with AllStripes as we work together to collect, synthesize and analyze data from the NPC community that will support adding NPC to newborn screening lists nationwide.
Pam
,
Firefly Fund co-founder and executive director and NPC parent
Firefly Fund is proud to partner with AllStripes as we work together to collect, synthesize and analyze data from the NPC community that will support adding NPC to newborn screening lists nationwide.
Pam
,
Firefly Fund co-founder and executive director and NPC parent
We joined AllStripes so we can contribute relevant and accurate data to help improve early screening and treatments for NPC.
After being involved in the community for over 10 years, we have come to realize that data is everything. We joined AllStripes so we can contribute relevant and accurate data to help our doctors, clinicians and trial investigators improve early screening and treatments for NPC.
Gail and Harry
,
parents of Hayley and Alec
I joined to advocate for the gathering of information that will aid our community and researchers in future screening and treatments for Niemann-Pick.
Liz
,
NPC ambassador and mother of Tyler, Katie and Faith, who lost their battle with NPC

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Research participants
needed
Help reach this goal to jumpstart the research program! More participants can join at any time to make research even stronger.
The first recruitment goal has been met! But we encourage more participants to join to make this research as strong as possible.

Be part of the AllStripes program for

NPC

Niemann-Pick disease type C

Your experience with
NPC
is important and can help researchers advance treatments for your community.
By joining AllStripes, you can contribute your de-identified medical records to multiple research efforts for
NPC
without leaving home. We do the work to collect your information, and you’ll receive all your records in your secure account, at no cost.

By joining AllStripes, you can contribute to multiple NPC research projects without leaving home.

For our first study, we’re looking for families of sibling pairs with NPC willing to contribute their de-identified medical records. However, all NPC families in the U.S., Canada and the U.K. are welcome to join the AllStripes program to stay updated and be part of future projects.

AllStripes does the work to collect your records and make them accessible in your secure account, at no cost.

Learn more about

NPC

Niemann-Pick disease type C (NPC) is a rare, genetic disease that affects the body’s ability to metabolize fat within cells. It is in a group of disorders called lysosomal storage diseases. In NPC, cholesterol and other fats build up and affect the liver, spleen, lungs or brain.

Benefits to joining

Power to the patients

Benefits to joining

Have a voice in research

Your de-identified records, and your input through surveys, can help guide treatment research.

Access your medical records

We collect your records, at no cost, in your secure account. View doctors’ notes and your care journey.

Learn from your community

Receive updates on your research impact.

How it works

1. Sign up

In just 15-20 minutes, create your private account, authorize us to get to work on your behalf, and share the names of your health facilities. No appointments, no uploads.

2. We get to work

The AllStripes team does the work to collect your records, at no cost, in your secure account. Access doctors’ notes you may have never seen and view your care journey.

3. Power research

Our team de-identifies your records by removing information like name and address, and analyzes your community’s data to help jumpstart or speed up new treatment research.

AllStripes FAQs for patients and caregivers

Privacy and data ownership

AllStripes Research is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation. Read more.

Access your records, drive research