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Wilson Disease Patient Support Group Meetings

One of the silver linings to come out of the COVID-19 pandemic is the use of virtual technologies to make personal connections and provide support. This is especially important for people living with a rare medical condition, such as 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, will be stepping back from moderating our groups, but we hope to engage another group moderator soon. Anyone who has already registered for Emily’s group that was previously scheduled for July 18, 2026, will be contacted directly about the change.

Peer-Led Virtual Support Meetings

Carly Albinder

We are still offering peer-led support groups facilitated by Carly Albinder, 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 seven years, she has worked as an oncology social worker at The Mount Sinai Hospital in New York City.

Register in advance for each meeting. After registering, you will receive a confirmation email containing information about joining the meeting.

Click Here to Register



2026 Meetings:

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.

Donations

Why Your Donation Matters

Your donation to the Wilson Disease Association does more than keep the lights on—it powers education, awareness and action. With your support, we’re able to maintain vital resources like this website, produce trusted educational materials, fund critical research and host events that bring together patients, caregivers and medical professionals. Most importantly, your generosity helps raise awareness so more people are diagnosed earlier and treated effectively—giving them the best chance at a full, healthy life.

When you give, you’re not just supporting an organization—you’re joining a powerful movement to change the future of Wilson disease. You’ll stay informed about the latest in research and treatment, gain access to exclusive webinars and educational resources, and remain connected to a global community that understands. For more than 40 years, our shared commitment has fueled advances in care, deepened understanding, and amplified the voices of those affected by Wilson disease. Together, we’re building a stronger, more informed future.

WILSON DISEASE ASSOCIATION

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