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Wilson Disease Patient Support Group Meetings
One of the silver linings to come out of the COVID19 pandemic is the use of virtual technologies to make personal connections and provide support. This is especially important for people going through the journey of living with a rare medical condition, like Wilson disease. With the growing comfort of using virtual platforms and a skilled counselor to lead a support group, we launched Zoom support group meetings for patients and caregivers in 2022. They were so successful that we are continuing with quarterly 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 moderates the group. We appreciate Emily’s 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 each meeting. After registering, you will receive a confirmation email containing information about joining the meeting. You can register using the following link:
https://northwestern.zoom.us/meeting/register/tJcoc-utqzwjHt0a__UDnWNxLd9tDIsLqE07
Northwestern also requires that all participants complete a consent form, which you can find here: https://forms.feinberg.northwestern.edu/view.php?id=1733926
When in 2026:
January 22
April 23
July 23
October 22
All meetings are at 08:00 PM Eastern Time (New York City)
Peer-led Virtual Support Meetings
Emily Zivin
Carly Albdiner
In addition to the group moderated by Emily Zivin, MSW, LCSW, Social Worker, Northwestern Movement Disorder Center, we are also offering additional peer led support groups facilitated by Carly Abramson, LCSW, OSW-C, Wilson disease patient, WDA member and social worker. These groups are in English but we welcome those who speak other languages to listen in and use translation services, as needed. Carly Albinder has nine years of experience as a social worker in New York City and Australia. For the last five years, she has worked as an Oncology Social Worker in New York City at The Mount Sinai Hospital.
Register in advance for each meeting. After registering, you will receive a confirmation email containing information about joining the meeting. You can register using the following link:
https://us02web.zoom.us/meeting/register/tZEkf-uorDgqGtCcHWcwhV4IzvyvYs0PGb5a
After registering, you will receive a confirmation email containing information about joining the meeting.
When in 2026:
March 12
June 18
September 10
December 10
All meetings are at 08:00 PM Eastern Time (New York City)
Hope to see you there!
Other Resources
An additional source of information and support is the social media site Inspire: visit the Wilson Disease Association Support Community .
Also, look for Wilson disease groups on Facebook that are established and monitored by patients.
WDA support resources are supported by volunteers who are not medical professionals. The information shared in these forums is for general educational and peer support purposes only. Please consult your physician for medical advice.
