I joined to take back control of my medical file. I am the best person to advocate for my needs, and advocating makes me a better person.
Sarah
,
Ambassador and manifesting carrier of adrenomyeloneuropathy
I joined to take back control of my medical file. I am the best person to advocate for my needs, and advocating makes me a better person.
Sarah
,
Ambassador and manifesting carrier of adrenomyeloneuropathy
I want to help take control of advancing treatments for ALD, with the goal that this whole community can have the positive outcomes they deserve.
Sarah
,
ALD carrier and advocate
A rare disease like ALD isn't the end ... it's only the beginning!
Ken
,
advocate for the ALD community
I've been given an incredible gift of surviving ALD, so of course I want to give back in as many ways as possible.
Jon
,
survivor and advocate for the ALD community
Giving back to the ALD community is an ongoing life mission and I'm thrilled I can do just that (and more) through AllStripes.
Olivia
,
ALD carrier and advocate

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50

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

ALD

adrenoleukodystrophy

Your experience with
ALD
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
ALD
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
[Foundation partners still to be added]

Learn more about

ALD

ALD is a genetic condition caused by pathogenic variants in the ABCD1 gene, which lead to a buildup of a substance called very long chain fatty acids (VLCFAs) in tissues throughout the body, including in the brain. This buildup damages the protective layer of the nerve cells of the brain, impacting brain function and leading to progressive neurological symptoms.

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.
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Access your records, drive research