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.

Emily Zivin, MSW, LCSW, Social Worker, Northwestern Movement Disorder Center will moderate the group. We appreciate her willingness to do this for our patient community. She has experience doing the same for a different patient group. We also want to acknowledge the WD Center of Excellence at Northwestern University in Chicago for making this possible.

Register in advance for this meeting. After registering, you will receive a confirmation email containing information about joining the meeting. You can register using the following link:


Northwestern also requires that all participants complete a consent form, which you can find here: https://forms.feinberg.northwestern.edu/view.php?id=1733926

Scheduled meetings

Last Thursday of the month in April, July and October, 2022

April 28th
July 28th
October 27

Hope to see you there!

Gene Therapy

Rhonda Rowland, Moderator

Webinar: Now on Demand. Follow the link to register and view.
Duration: 90 minutes
Registration (no admission fee):

Click here to register

Moderator: Rhonda Rowland is a journalist, filmmaker, WDA board member and patient.

Speaker: Frederick K. Askari, MD, PhD, Gastroenterology, Internal Medicine, Clinical Molecular Genetics, University of Michigan, Ann Arbor

Frederick K. Askari, MD, PhD

Dr. Askari is conducting clinical trials for Vivet and Ultragenyx, both of which have introduced a gene therapy for Wilson Disease.

Webinar is presented in English but will be translated to over 20 languages in the “LIVE” presentation only.  A recording of the webinar will appear on the WDA Youtube channel later.

Format: A brief video presentation followed by an interview with Dr. Askari. Viewers will be able to type in questions in real time.

Sponsors of this webinar include:


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.

Make a Donation
Make a Cryptocurrency Donation


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

Join Us!


Contact Us

More Ways to Contact Us