A family’s fight for the cure for Canavan disease.


Please help by forwarding this to all the other families affected by Canavan disease.
If you want treatment for your child, or are unsure, or just want to help another child with Canavan disease then please fill out this survey and then forward it to other families or groups where they might see it.
This is the only International Patient Registry for Canavan disease we need it circulated worldwide.

To join the International Patient Registry for Canavan Disease
Please Click on this link to enter your confidential data:  


This registry is the only database where patients enter and own their own data. The diseases that are going to get to the clinic ahead of Canavan have all used this registry. The registry is maintained by 'PatientCrossroads' - they specialize in helping small organizations advocate for patients with relatively rare diseases. Their platform utilizes the same level of security and privacy as the NIH and adheres strictly to all HIPAA laws. Please go to this survey and fill it out on behalf of your child. It takes approximately 20 minutes.

YOU WILL RETAIN OWNERSHIP OF YOUR OWN DATA and can withdraw your information at any time. We need to locate as many patients with Canavan as soon as possible and get the information into a database so Pfizer can see that there are enough patients living with Canavan disease to support a trial. We have no ownership of the data. The survey is patient-entered and they will also retain ownership of their own data and can withdraw at any time.

 This registry will be instrumental in helping us all gain a better understanding of the incidence and prevalence of Canavan disease. We will also have the ability to recruit patients for any clinical trials and aid in prescreening to determine eligibility.

Canavan Research Illinois


Helping children affected by Canavan disease by developing treatments and one day THE CURE

Ilyce, Michael, Max and Alex Randell

Helping children affected by Canavan disease by developing
treatments and one day THE CURE