Wilson Disease Patient Support Group Meetings The Covid-19 pandemic made everyone realize how important it is to have contact with other people affected by Wilson Disease. We missed in-person meetings too. Fortunately, we have technology and a group leader willing to help us launch Zoom support group meetings for patients and caregivers. We’ve set a calendar for our initial three meetings. What we hope for are helpful, honest interactions between patients and caregivers to support each other.
Gene Therapy Webinar: Now on Demand. Follow the link to register and view.
Dr Askari 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 firstname.lastname@example.org
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