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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 2024:

January 25
April 25
July 25
October 24

All meetings are at 07:00 PM Central Time (US and Canada)

Peer-led Virtual Support Meetings

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 Abramson 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/tZwpcuuuqTMsHdJUpmCGYo2_F-0OWymlTBRx

When in 2024:

September 12

December 12

All meetings are at 07:00 PM Central Time (US and Canada)

Hope to see you there!

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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