What is the ASXL Census—and how can it help us get closer to treatments?
Every person counted is a step toward progress.
At the ASXL Rare Research Endowment (ARRE) Foundation, we’re launching something simple but powerful: the ASXL Census. If you’ve never heard the word “census” outside of a government survey, you’re not alone. But in rare disease communities like ours, a census can be one of the most important tools we have to drive change.
What is the ASXL census?
The ASXL Census is a global effort to count individuals with ASXL-related disorders—including Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3). Whether you’re a parent or primary caregiver, or you’re an adult with one of these conditions yourself, we’re asking you to get counted.
By filling out a short form with a few key details—like your loved one’s birth year, diagnosis year, and ASXL gene variant—you help us create a clearer picture of who makes up the ASXL community.
And just as important: you help us show the world that we’re here. That we’re connected. That we’re ready for progress.
What the ASXL Census is not
The ASXL Census is not a research study or clinical trial. You won’t be asked for your medical records or to complete a long questionnaire. You won’t need to participate more than once. And your personal information will never be shared publicly.
You don’t even need to have your genetic report in front of you to participate—although we’ll ask for some variant (gene change) details if you have them. If you’re not sure, you can skip those questions or ask us to follow up with you later.
The goal of the ASXL Census is simple: to count our community.
Why the ASXL Census matters
In the world of rare disease research, numbers matter.
The more people we can count, the more attention we can attract—from researchers, doctors, funders, and pharmaceutical companies. These are the people and institutions who can help us move toward future treatments. But first, we need to show them that our community exists—and that we’re engaged, and eager to participate in research.
Without numbers, we’re invisible. With them, we are a force.
Counting our community also helps us:
Advocate for more research into ASXL-related disorders
Plan future clinical trials that need to recruit specific age groups or variant types
Show trends in diagnosis, age, and geography
When you participate in the ASXL Census, you’re not just adding a number. You’re adding your voice to a growing, global community.
