Welcome to the Alagille Syndrome Patient Insights Network

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Join patients around the world in building the PIN community.

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Find out about research studies and clinical trials.

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Advance research and speed development of new treatments.

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our voice matters. The Alagille Syndrome Patient Insights Network (PIN) amplifies the voices of patients to help researchers and drug developers find better treatments, faster. Register now to become part of a research-ready PIN with participants from around the world.
 
We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the Alagille Syndrome PIN, we connect participants with advocacy organizations, clinicians, researchers and drug developers for the benefit of all.
A Patient Insights Network, or PIN, is more powerful than a traditional patient registry. It is an interactive, online platform for surveying disease communities, uploading medical records, tracking health outcomes and sharing de-identified disease data. It’s HIPAA compliant, secure and research-ready.
 
This PIN can help generate research and academic interest in Alagille. It can expedite trial recruitment and ultimately generate more progress toward treatments and cures. By adding your family's information to this PIN, you help amplify the patient's voice to bring solutions to the Alagille community. 
 
Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. 

Click here to register now!

Y
our voice matters. The Alagille Syndrome Patient Insights Network (PIN) amplifies the voices of patients to help researchers and drug developers find better treatments, faster. Register now to become part of a research-ready PIN with participants from around the world.
 
We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the Alagille Syndrome PIN, we connect participants with advocacy organizations, clinicians, researchers and drug developers for the benefit of all.

LEARN MORE

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