You can advance research for NPC families

(Niemann-Pick disease type C)

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 and Canada 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.

0/40 research participants

Help this community hit the research goal by sharing with your network!

Who’s involved?

Firefly Fund

Firefly Fund

National Niemann-Pick Disease Foundation

National Niemann-Pick Disease Foundation

Niemann-Pick Canada

Niemann-Pick Canada

Ara Parseghian Medical Research Fund

Ara Parseghian Medical Research Fund

Marc Patterson

Marc Patterson

Mayo Clinic

How sharing your journey powers progress

  • Jumpstart new research for your rare disease

    Your (or your loved one’s) medical records contain clues that can lead to new treatments.

  • Determine important symptoms to target

    AllStripes researchers learn from patient records what would truly improve quality of life.

  • Speed up development of treatments

    Using cutting-edge tech we analyze your community’s data to improve trial design and chances of success.

  • Be part of multiple research efforts, without leaving home

    Your community’s de-identified records can advance multiple treatment studies.

BENEFITS TO JOINING

What you’ll get along the way

We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.

Access your records

We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.

See how your rare disease journey compares to others with your condition, and what’s helping.

Learn from your community

See how your rare disease journey compares to others with your condition, and what’s helping.

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Track your impact

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Join now

Our work with NPC research

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.

NPC can occur at any age but primarily affects children. The disease has no known cure, and most children with NPC do not live to adulthood.

The latest on our research: We are currently recruiting families to help make this NPC research database as strong as possible, in partnership with our four foundation partners. We hope to fuel multiple future research projects and studies, and will keep participants updated on our progress.

We currently have the following studies ongoing for NPC:

  • Jumpstart
  • Accelerate
  • Insights

The NPC program is in the jumpstart stage.

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Impact research

3. Impact research

Power multiple research projects at once by contributing your de-identified data

Still have questions?

Check out our FAQs

Our values & principles.

1
Patients own their data

We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.

2
We protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

3
Researchers gain access

We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.

4
Inclusiveness in the community

We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.

5
Driving forward therapeutic development

Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.