Having a rare disease like IRF2BPL doesn't come with a lot of hope. AllStripes is giving us a much-needed platform for hope for Kaylee's future and the future of kids like her.
Tanya
,
ambassador and parent of Kaylee, who has IRF2BPL
Having a rare disease like IRF2BPL doesn't come with a lot of hope. AllStripes is giving us a much-needed platform for hope for Kaylee's future and the future of kids like her.
Tanya
,
ambassador and parent of Kaylee, who has IRF2BPL
I want my kids to know that they can and will make a difference in the world. Through working to save Eli, we can save many children for years to come!
Sanam
,
mother of a child with IRF2BPL
AllStripes is giving us the platform to raise awareness, further research and help us to better understand Ezra's diagnosis.
AllStripes is giving us the platform to raise awareness, further research and help us to better understand Ezra's diagnosis. AllStripes is helping us to fight for Ezra's future.
Christina
,
mother of a child living with IRF2BPL

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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

IRF2BPL

IRF2BPL-related disorders, NEDAMSS

Your experience with
IRF2BPL
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
IRF2BPL
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.
Our partners for this research program

Learn more about

IRF2BPL

IRF2BPL-related disorders, also known as NEDAMSS (neurodevelopmental disorder with regression, abnormal movements, loss of speech, and seizures), are a spectrum of neurodevelopmental disorders caused by pathogenic variants in the IRF2BPL gene. This condition appears to be very rare, and the presence and severity of the signs and symptoms of IRF2BPL-related disorders can be variable.

Active research studies

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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