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Welcome to NBIAcure

Although it may be out of reach today, a cure for each of the NBIA disorders is in our sights. We care deeply about improving the lives of children and adults with NBIA. Our team at NBIAcure will provide support and information to patients, families, clinicians and researchers, initiate new research studies to lay the foundation for clinical trials, and collaborate with academic and industry partners to develop new treatments.

We invite you to explore our site and return often to check on the latest news stories, find out about new studies that have launched, and learn how you can get involved. Your participation is one of the keys to the cure.

For the first time ever, people affected by an NBIA disorder can tell us about their disease and how it affects their lives. Better information about how each of these diseases progresses prepares us for therapeutic drug trials. We are building knowledge to determine if new drugs improve health and function. People with an NBIA disorder as well as family members will be able to contribute. Stay connected here and help our community become 'trial ready.'

NBIAcure News

Introducing the Spoonbill Foundation
As promised, here are updates on the fundraising questions you had about CoA-Z, the possible treatment of PKAN that we are developing. Our goal is to make CoA-Z available to everyone at the lowest cost possible so we have formed sister non-profit foundations in the Netherlands and US to further develop...
Announcement About PKAN Treatment Research
Is it true that OHSU is working on a treatment for PKAN? Many of you in the family community have heard rumors that the OHSU team is working on a new treatment for PKAN, and we know you are eager to learn more. We’ve been keeping very quiet about our work...


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