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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

Summary of 2016 BPAN Research Meeting
A summary of the 2016 BPAN Research Meeting in Portland is now up on our website! Check it out to learn about what we did, see lots of pictures of the wonderful children and families who attended and read the research updates we shared at the symposium. We can't say...
PKAN Best Practices Feedback Request
Last year at the family conference, Dr. Hayflick announced that work had begun on a set of guidelines called “Best Practices in PKAN" that would provide recommendations and instructions for taking care of a child or adult with PKAN. This project was funded by the NBIA Disorders Association, Hoffnungsbaum, e.V.,...

  


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