“I believe it is important to have our voices heard and share our stories to encourage and inspire others. AllStripes provides that platform for us patients to do just that. After I joined, I instantly became an advocate for the research and development for Morquio B therapies, which we so desperately need.”
– Arthur
“By joining AllStripes, we're empowering ourselves, our stories and our knowledge for both Morquio A & B.”
– Maria, Founder of the Morquio Community Foundation
“Medical information is crucial in furthering research for rare conditions like MPS IVB. AllStripes provides a secure platform for patients to come together and make a difference from the safety of their own home.”
– Priest Family
“You have the power to advance rare disease treatments.”

You can accelerate drug development in Morquio B

(Mucopolysaccharidosis Type 4B)

Your experience with Morquio B 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 Morquio B 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.

Join research

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

Who’s involved?

Priest Family, Patient Advocates

Priest Family, Patient Advocates

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 Morquio B research

MPS IVB is a progressive condition caused by pathogenic variants in the GLB1 gene. GLB1 is an important part of the body’s process of breaking down large sugar molecules called glycosaminoglycans (GAGs). Pathogenic variants in GLB1 lead to an accumulation of GAGs in the lysosomes. Lysosomes are the compartments in cells that break down molecules. This accumulation of GAGs causes the symptoms of MPS IVB, which can include skeletal abnormalities, vision and hearing loss, breathing difficulties, and problems with the heart valve. Current treatment is aimed at alleviating symptoms and improving quality of life.

The latest on our research: We are jumpstarting our MPS IVB program to accelerate research on the condition and welcome all parents and caregivers interested in participating and spreading the word to the MPS IVB community.

  • Jumpstart
  • Accelerate
  • Insights

The Morquio B 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 Morquio B 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.