FAMILY
Find the ASH1L family community
Tell us how ASH1L connects to your family and what kind of support, information, or connection would be most helpful.
CONNECT
You are welcome here.
Whether ASH1L is part of your family, clinical work, research, or support role, tell us what brought you here and what would be helpful. We’ll help you find the right next step.
PARENT-TO-PARENT COMMUNITY
Join the ASH1L Mechanisms Working Group.
The independent ASH1L Mechanisms Working Group is a place for families to connect, compare experiences, and learn from one another. A brief introduction is enough—reports and identifying records are not needed to join the conversation.
CLINICAL
Discuss a clinical question
Ask about the public evidence framework, an educational resource, or a possible clinical collaboration.
Open the Clinician Brief →RESEARCH
Explore a study or data partnership
Tell us your institution, the question you are exploring, where the work stands, and how you hope families might participate.
START HERE
Tell us how we can help.
A brief introduction is enough. This form opens a draft in your own email app; ASH1L.org does not collect or store what you write.
FOR YOUR PRIVACY
Records can wait.
If a document becomes helpful later, we’ll agree on an appropriate way to share it. For now, please keep medical or genetic reports, full dates of birth, addresses, images, recordings, school records, private messages, and another family’s information with you.
You decide what to shareBegin with what feels comfortable.
Records can waitA suitable sharing method can be agreed if documents become useful.
Permission stays specificContact, analysis, acknowledgement, presentation, and publication remain separate choices.
Every question is welcomeFamilies, clinicians, researchers, educators, and therapists can start here.