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!
THE STORY OF MY WILSON DISEASE: AGE 8 TO 53
Wilson Disease2025-04-21T12:30:12+00:00April 21, 2025|0 Comments
Share Your Treatment Experience
Wilson Disease2025-03-26T13:31:22+00:00March 26, 2025|0 Comments
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
Why Your Donation Matters
Your donation to the Wilson Disease Association does more than keep the lights on—it powers education, awareness and action. With your support, we’re able to maintain vital resources like this website, produce trusted educational materials, fund critical research and host events that bring together patients, caregivers and medical professionals. Most importantly, your generosity helps raise awareness so more people are diagnosed earlier and treated effectively—giving them the best chance at a full, healthy life.
When you give, you’re not just supporting an organization—you’re joining a powerful movement to change the future of Wilson disease. You’ll stay informed about the latest in research and treatment, gain access to exclusive webinars and educational resources, and remain connected to a global community that understands. For more than 40 years, our shared commitment has fueled advances in care, deepened understanding, and amplified the voices of those affected by Wilson disease. Together, we’re building a stronger, more informed future.
