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 2025:

January 23
April 24
July 24
October 23

All meetings are at 08:00 PM Eastern Time (New York City)

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/tZEkf-uorDgqGtCcHWcwhV4IzvyvYs0PGb5a

After registering, you will receive a confirmation email containing information about joining the meeting.

When in 2025:

March 13
June 12
September 11
December 11

All meetings are at 08:00 PM Eastern Time (New York City)

Hope to see you there!

Additional Support: Wilson Disease Ambassador Program

You are not alone. The Wilson Disease Association (WDA) is more than an organization—it’s a global community of individuals and families who understand firsthand the impact of Wilson disease. Through our Wilson Disease Ambassador Program, we connect you with dedicated volunteers who either have Wilson disease themselves or care for someone who does.

Our Ambassadors are here to provide information, guidance, and emotional support, sharing from their own experiences to help you navigate your journey. Whether you’re newly diagnosed, a longtime caregiver, or simply looking to connect, we encourage you to reach out.

📧 Email: WDAmbassador@wilsonsdisease.org
📞 Phone: 414-961-0533 ext. 3003 (Leave a message and you will receive a call back)

When you contact us, we’ll connect you with a WDA Ambassador who truly understands what you’re going through. With your permission, they’ll stay in touch—by phone or email—to guide you through the many ways we can help: resources, events, community support, and more.

Support the Cause

Join our mission. The Wilson Disease Association is committed to education, advancing treatments, and ultimately finding a cure for Wilson disease. Our work is powered by the compassion and commitment of volunteers—people just like you.

By becoming a part of the Wilson Disease Ambassador Program, or simply staying connected with our community, you’re helping to build a world where every Wilson disease diagnosis comes with hope, connection, and quality care.

📧 Want to join us or connect with someone who understands?
Email: WDAmbassador@wilsonsdisease.org
Phone: 414-961-0533 ext. 3003 (Leave a message and we will call you back)

Let’s work together to support families, raise awareness, and save lives. With your help, we can create a stronger, more informed Wilson disease community.

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.