News

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!

Events

Webinars

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.

Big WOW

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 judi.keller@wilsonsdisease.org

Patient STores

Wilson Disease patients share a wealth of information in their stories. Some stories highlight the desperate attempt to get a diagnosis and how long it can take. Others tell of a sudden catastrophe and loss of life. The symptoms are like snowflakes because no two patients or stories are alike.

These stories can benefit other patients so they can see that they are not alone. For health practitioners, the stories prove that Wilson disease patients present in myriad ways. They should not discount. An arm tremor in a young person could indicate Wilson disease.

The patients that share stories are brave, and they help all other patients. Contact the WDA if you want to share your story here. The WDA reserves the right to edit stories submitted for grammatical correctness.

Donations

Your support allows the WDA to maintain this website, produce educational materials, support research, and hold meetings for people living with WD, their families, and the healthcare community.

Membership

As a member, you have the opportunity to communicate your concerns, share your experiences, learn about the most recent advances in Wilson disease treatment and research, and contribute to important decisions that need to be made so the WDA can be a strong patient advocacy group

WILSON DISEASE ASSOCIATION

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