Welcome to the Parry-Romberg 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 Parry-Romberg Patient Insights Network (PIN) amplifies the voice 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 Parry-Romberg 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 towards treatments and cures. By adding your family's information to this PIN, you help amplify the patients voice to bring solutions to the Parry-Romberg 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 Parry-Romberg Patient Insights Network (PIN) amplifies the voice 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 Parry-Romberg PIN, we connect participants with advocacy organizations, clinicians, researchers and drug developers for the benefit of all.

LEARN MORE

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