This page is a great place to look for all current news and announcements. The content can be new drug trials, requests for participation in focus groups, temporary drug shortages, or any topic that needs attention now!

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Gene Therapy
Webinar to be held in March. Exact date to be determined.

Dr Askaari is an investigator on both gene therapy clinical trials occurring at this time and will discuss gene therapy and be interviewed by Rhonda Rowland to be followed by questions from the live audience.

This webinar will be translated into 24 languages for the live audience.  Translation is not possible while watching the recording.


The Big Wow is an annual fundraiser held sometime in the fall of the year. It gives family members of patients and patients a chance to tell their story of Wilson Disease to raise awareness of the disease. All of the money raised with this fundraiser goes to fund the Patient Registry Research Project. Amazingly, small family groups from almost anywhere could raise hundreds of thousands of dollars while telling their stories. We named these people the Wilson’s Warriors and we share their stories on our website on the stories tab.

Hey, Big wow volunteers, whether you can have an in-person Big wow or a virtual one, we are ready to help you and look forward to your suggestions. Contact [email protected]

Wilson’s Warriors

Stories of warriors touched by Wilson’s Disease and how they fought back by rallying people they know to walk with them and raise money for the patient registry.

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