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Canavan Disease Patient Insight Network (PIN)

Your family’s experience living with Canavan disease can provide important information on how the disease progresses and affects both patients and families. As medicine is moving rapidly towards the clinic, and the patient’s voice is becoming an integral part of both research and drug development—your insight is crucial.

Creating a shared network that collects experiences directly from patients and families is one of the most important things a community can do. This Canavan Disease PIN is an opportunity to build one central and international network of information on families living with Canavan. By gathering the experiences of families from around the world, we are creating a research-ready community poised to help drug developers and researchers get closer to treatments and a cure.

There is currently no other network of this kind for Canavan, where patients own their data, opt-in and choose what to share. Please help us by taking a few minutes to join us. If you know of other patients living with Canavan disease, please forward the information to them as well. Together we can improve the future for all those touched by Canavan disease.


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Canavan Disease Research

Canavan Research Illinois (also known as Canavan Disease Research) is a nonprofit corporation and 501(c)(3) public charity based in Illinois, established in April 2000 to meet a critical need to support medical research to treat, cure, and improve the quality of lives of all children battling Canavan disease, a rare fatal genetic neurological disorder.


Join Us

We invite all Canavan disease organizations to join this effort and unite the Canavan community in developing a resource that serves all families, researchers, advocates and stakeholders. Contact Us today!