“AllStripes truly cares about us rare disease families. I’m honored to be a part of something like this.”
– Emily, mother of a Hunter Syndrome patient
“Anything like AllStripes that can help I’ll do. I need to fight for my son in every way I can.”
– Ashly, mother of a Hunter Syndrome patient
“Patients should not be bystanders in drug development”
– Onno, founder of AllStripes and rare disease patient

You can accelerate drug development in Hunter syndrome

(Hunter syndrome - MPS II)

Your experience with Hunter 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 Hunter 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.

Questions? Check out our FAQ
Join research
0/25 research participants

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

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 Hunter syndrome research

Hunter syndrome, also known as mucopolysaccharidosis (MPS) type II, is a severe lysosomal storage condition that occurs when cells can’t break down long chains of sugar molecules. This causes progressive damage to many organs. Hunter syndrome primarily affects males, with symptoms starting in early childhood. Patients with severe disease experience progressive cognitive decline, breathing issues, and cardiac disease, and many pass away at a young age. New and more effective treatments are needed for Hunter syndrome.

The latest on our research: AllStripes is working on a natural history for Hunter syndrome with the biopharmaceutical company Denali Therapeutics. This research will help design better potential future trials and we are actively recruiting for participants in the U.S.

  • Jumpstart
  • Accelerate
  • Insights

The Hunter syndrome program is in the jumpstart stage.

Be part of research

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

Join now

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.

Be part of research

AllStripes Research for Hunter syndrome 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.