I’m someone with Kabuki who has been to university. I joined to remind others to stay positive and you can still achieve what you want in life.
Bukky
,
Kabuki syndrome Ambassador
I’m someone with Kabuki who has been to university. I joined to remind others to stay positive and you can still achieve what you want in life.
Bukky
,
Kabuki syndrome Ambassador
We joined AllStripes because we want to use our experiences to contribute to a deeper understanding of Kabuki syndrome.
Sally
,
mum to Harry, who has Kabuki syndrome
I joined AllStripes because I want to help researchers more with the Kabuki research studies that can benefit younger Kabuki Warriors.
Mathew
,
Kabuki syndrome Ambassador
As a patient, I hope to aid in Kabuki syndrome research and inspire families by sharing my journey.
Kristin
,
Kabuki syndrome Ambassador
I want everyone with Kabuki syndrome to live a long life and be happy and healthy. As an Ambassador, I hope to inspire others with Kabuki syndrome.
Aaron
,
Kabuki syndrome Ambassador
Joining AllStripes was an easy way for us to give back to our community.
Joining AllStripes was an easy way for us to give back to our community. We are thankful to families who participated in research before us — we wouldn't have a diagnosis without them! We're excited to see what else we can learn together.
Amanda and Jose
,
parents of a child with Kabuki syndrome
We joined AllStripes to be part of a powerful force, driving toward the best possible care for our children.
For any rare disease, the only way to make progress is to come together as a community and unite ourselves in the path to progress. We joined AllStripes to be part of a powerful force, driving toward the best possible care for our children.
Leila
,
parent of a child with Kabuki syndrome
I love that AllStripes makes it so much easier for us to participate in important research by collecting our medical records for us, and I am reassured to know that all of the data is de-identified.
Dana
,
Kabuki syndrome Ambassador

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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

Kabuki syndrome

Your experience with
Kabuki syndrome
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
Kabuki syndrome
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

Kabuki syndrome

Kabuki syndrome is a rare genetic condition that affects many different parts of the body, and the range and severity of symptoms differ from person to person. Children with Kabuki syndrome often have distinct facial features, low muscle tone, intellectual disability, heart problems, skeletal abnormalities, growth delay and problems with feeding.

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

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