Wilson Disease Association

10/11/2026

What an inspiring few days in Pittsburgh! 💚

The Wilson Disease Association was honored to be an invited partner at Community Liver Alliance's second annual National Liver Gathering.

Our team had a dedicated exhibit where we shared information about Wilson disease and our advocacy work with attendees from across the liver health community. We also attended an Orphalan US product theater, where healthcare professionals learned about recognizing, managing and treating Wilson disease, an important step toward earlier diagnosis and better care.

We were grateful to see our industry partner Eton Pharmaceuticals there in support of liver health, helping share our Copper Conscious Eating cookbook with attendees.

Most of all, we're thrilled that five women with Wilson disease represented our community:
🔹 Lana Escamilla, WDA Board Member
🔹 Ginta Ginaityte, WDA Patient Assistance & MAP Coordinator
🔹 Laura Kalt, Kerri Ann Leach and Judy Kayam, WDA Patient Advocates

Thank you to Community Liver Alliance for including us, and to everyone who stopped by to learn more. Together, we're raising awareness and building a stronger future for people living with Wilson disease.

10/08/2026

Patients are at the heart of Wilson disease care.

Ten courageous patients and caregivers shared their diagnosis stories in this video to help healthcare professionals recognize Wilson disease earlier and connect patients with the treatment they need as soon as possible.

The video opened Wilson Disease 2026: Advances in Diagnosis, Care & Research, the physician education program held during the 2026 WDA Annual Conference in Chicago. By bringing these experiences directly into the clinician education setting, these patients and caregivers demonstrated what patient advocacy and elevating the patient voice are all about: sharing lived experience to help improve recognition, diagnosis, and care.

Their voices will continue to educate healthcare professionals as the video remains part of ongoing educational opportunities related to Wilson disease.

Watch the video: https://youtu.be/YL0o1jcEOLo

Patients are at the heart of Wilson disease care.This video was c...

10/07/2026

We're excited to share meaningful news: the first patient has received PM577a in the Prime Medicine global clinical trial for Wilson disease.

PM577a is an investigational, one-time therapy designed to correct the H1069Q mutation, the most common genetic change behind Wilson disease in North America.

Rather than managing copper buildup day after day, it aims to fix the problem at its genetic source. It is the first time a Prime Editing therapy from Prime Medicine has been tested in people.

The U.S. FDA also recently granted PM577a Rare Pediatric Disease designation, recognizing the serious impact Wilson disease has on children and families.

This trial is an early but important step, and there is much more to learn.

From Prime Medicine: To the patients and families taking part, the doctors and study teams, and everyone in the Wilson disease community who has shared their stories with us: thank you. This milestone belongs to you too.

10/05/2026

Reconnecting, making new connections, smiling, laughing, embracing, asking questions, and getting answers — the 2026 WDA Annual Conference was a special opportunity for members of the Wilson disease community to come together in Chicago.

Patients and caregivers spent the day learning from Wilson disease experts, hearing about topics that matter to their daily lives, and having opportunities to ask questions and connect one-on-one with clinicians about their own Wilson disease journeys.

Just as important were the moments of connection — meeting others who understand the challenges of Wilson disease, sharing experiences, and spending time together as a community.

Attendance exceeded our expectations, with people joining us from as far away as South America and Europe. We are profoundly thankful to the Northwestern Medicine staff, our speakers, our volunteers, and our industry partners for helping make the conference possible.

We hope to see all of this year’s attendees — and many more — at next year’s annual conference in New York City. Stay tuned for dates and other details.

Please enjoy these photos of members of our Wilson disease community gathering for Saturday’s day of learning.

09/30/2026

What a way to begin the 2026 WDA Annual Conference!

On a pleasantly cool Friday evening last week, more than 150 members of the Wilson disease community gathered aboard the Odyssey Chicago River for an evening of connection, conversation, laughter, and beautiful views of the Chicago skyline.

Attendees joined us from across the United States and from as far away as Poland and Paraguay.

More than anything, the evening was about being together — reconnecting with old friends, meeting new ones, and spending time with people who understand the Wilson disease journey.

Thank you to everyone who joined us and helped make the opening night of our conference so memorable.

09/29/2026

The conversation continues!

The second episode of Copper & Clarity, “More Than Symptoms: Everyday Life With Wilson Disease,” is now live!

Jean Marie shares an honest look at everyday life with Wilson disease, including her experiences managing health and well-being, staying strong, and living life to the fullest.

Kim, caregiver for her son James, reflects on the realities of providing 24-hour care and finding hope and happiness while navigating the uncertainties of Wilson disease.

🎧 Tune in and subscribe to Copper & Clarity: Conversations About Wilson Disease on Apple, Spotify, or YouTube to be notified of new episodes.

▶️ Watch the full episode on YouTube: https://youtu.be/ceA9kdZRMP4

09/26/2026

So many great speakers discussing the advances in Wilson disease treatment

09/24/2026

Chicago, here we come! 💜

The 2026 WDA Annual Conference is almost here, and we’re looking forward to welcoming the Wilson disease community to Chicago on September 25–26.

Before you arrive, take a few minutes to review the conference program. You’ll find the full schedule, speaker information, session details, and more.

📅 September 25–26, 2026
📍 Chicago, Illinois

View the 2026 WDA Annual Conference program:
https://wilsondisease.org/wp-content/uploads/2026/09/2026-WDA-Annual-Conference-Program-Digital.pdf

Whether you’re coming to learn, connect, share experiences, or simply spend time with others who understand Wilson disease, we’re looking forward to being with you.

Safe travels, and we’ll see you in Chicago!

09/23/2026

Finding people who understand what you’re going through can make a meaningful difference.

At the 2026 WDA Annual Conference, Emily Zivin, MSW, LCSW, will moderate “You Are Not Alone: Finding Community and Support — What a Support Group Looks Like.”

Emily will be joined by Nicole Valenzuela, a caregiver, and Wilson disease patients Carly Albinder, LCSW, OSW-C, and Arjun Ravichandra for a conversation about community, connection, and the role support groups can play for people affected by Wilson disease.

Emily is a licensed clinical social worker who provides outpatient clinical services at Northwestern Medicine for individuals living with Wilson disease and other neurologic conditions.

Earlier that afternoon, Emily will also present “Caring for the Caregiver: You Matter Too,” a session focused on recognizing and supporting the needs of caregivers.

📅 Saturday, September 26
⏰ 1:40–1:50 p.m. — Caring for the Caregiver: You Matter Too
⏰ 2:10–2:40 p.m. — You Are Not Alone: Finding Community and Support — What a Support Group Looks Like
📍 Chicago, Illinois

Register today: https://wilsondisease.org/get-involved/events/annual-conference/

09/22/2026

Don’t miss the second episode of Copper & Clarity, “More Than Symptoms: Everyday Life With Wilson Disease.”

One patient. One caregiver. Two unique perspectives.

Stay tuned for the episode release and subscribe to Copper & Clarity: Conversations About Wilson Disease on Apple, Spotify, or YouTube to be notified of new episodes!