Wilson Disease Association

Wilson Disease Association Welcome to the official fan page of The Wilson Disease Association International. We hope you will become a fan and join us in supporting our cause.
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We are dedicated to research, improved health, worldwide detection, and a cure for Wilson disease. Wilson disease is a rare, genetic disorder affecting only 1 in 30,000 people. It is often very difficult to find accurate, timely information on the disease. The Wilson Disease Association addresses this need by offering the latest information about the disease, its cause, symptoms, and treatments.

We’re pleased to spotlight Fred Askari, MD, PhD, Director of the Wilson Disease Center of Excellence at University of Mi...
08/20/2026

We’re pleased to spotlight Fred Askari, MD, PhD, Director of the Wilson Disease Center of Excellence at University of Michigan Medicine.

Dr. Askari has extensive experience diagnosing and treating Wilson disease, with a particular focus on improving care for patients with liver involvement. He has treated patients, advised physicians, and consulted with members of the Wilson disease community around the world on the latest advances in diagnosis and treatment.

At this year’s conference, Dr. Askari will present:
“Your Treatment Toolkit: Today’s Options and Tomorrow’s Therapies”

His presentation will review the treatments available today and explore emerging therapies that may expand options for people living with Wilson disease in the future.

Join Dr. Askari and other leading Wilson disease experts for a day of education, connection, and support.

📍 Chicago, Illinois
📅 September 26, 2026

Learn more about the conference and register:
https://wilsondisease.org/get-involved/events/annual-conference/

08/18/2026

Prepare for launch. 🚀

The Wilson Disease Association (WDA) has collaborated with Orphalan to create a new podcast series, "Copper & Clarity: Conversations About Wilson Disease."

Hosted by WDA President Rhonda Rowland, the series will feature conversations with physicians and people living with or caring for someone with Wilson disease about what it really means to navigate diagnosis, care, resources, and everyday life with this rare condition.

The first episode launches on Tuesday, September 1!

Stay tuned here for each new episode

⏰ Early-bird pricing has been extended through September 1!We’re on pace for record-breaking attendance at the 2026 WDA ...
08/14/2026

⏰ Early-bird pricing has been extended through September 1!

We’re on pace for record-breaking attendance at the 2026 WDA Annual Conference — and there is still time to be part of it.

To help as many members of the Wilson disease community as possible join us for this special event, we’re offering early-bird pricing for a little longer.

Early-bird rates:
💜 Individual patients and caregivers: $40
💜 Families with children over 18: $100
💜 Professionals: $150
💜 Children under 18: Free
💜 Medical students: Free with ID at check-in

Join us in Chicago for education, connection, and community.

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

The Wilson Disease Voice of the Patient report is now available!Earlier this year, patients and caregivers came together...
08/13/2026

The Wilson Disease Voice of the Patient report is now available!

Earlier this year, patients and caregivers came together to share what it is really like to live with Wilson disease — from the challenges of diagnosis and treatment to the ways the disease affects everyday life.

Those voices are now captured in the Wilson Disease Association’s Voice of the Patient report, based on perspectives shared during our January 29, 2026, Externally-Led Patient-Focused Drug Development meeting.

The report preserves the experiences, challenges, and priorities of the Wilson disease community and will serve as a resource for patients and families as well as clinicians, researchers, regulators, and those working to develop future treatments.

Thank you to every patient and caregiver who spoke up, participated, and helped make this report possible. Your voices matter.

Read the report:
https://wilsondisease.org/get-involved/events/voice-of-the-patient-report/

We’re sharing a research opportunity from the University of Hertfordshire exploring parental adjustment and wellbeing am...
08/12/2026

We’re sharing a research opportunity from the University of Hertfordshire exploring parental adjustment and wellbeing among parents of children with Wilson disease.

You may be eligible to participate if you:

• Are age 18 or older
• Are fluent in English
• Are the parent of a child diagnosed with Wilson disease
• Have not experienced mental health issues in the past year

Participation involves a 20–30 minute online questionnaire and is completely voluntary.

To learn more or take part:
https://herts.eu.qualtrics.com/jfe/form/SV_1zx3rfUUSLe3d4i

Please see the flyer for additional details and contact information.

During her high school graduation, Kelsey Pusillo became ill with what was initially thought to be mononucleosis. Just t...
08/11/2026

During her high school graduation, Kelsey Pusillo became ill with what was initially thought to be mononucleosis. Just three weeks into her freshman year of college, her health rapidly declined. She began passing out, developed jaundice, and ultimately went into liver failure. After a month in the hospital, she was diagnosed with both Wilson disease and hemochromatosis, a separate condition in which excess iron builds up in the body and can damage organs over time.

Her diagnoses disrupted her education and her plans for the future. Over time, however, Kelsey began taking greater control of her health, earned a certification in integrative health coaching, and found peace and hope through knowledge, advocacy, and connection with others who understand life with Wilson disease.

Today, Kelsey serves as WDA’s Patient Ambassador Coordinator and is helping build the Wilson Disease Ambassador Program, which aims to connect patients and caregivers with volunteers who share similar experiences. Her message to the community is simple and powerful: You are not alone.

Read Kelsey’s story:
https://wilsondisease.org/you-are-not-alone-kelseys-journey-with-wilson-disease/

Earlier this year, patients and caregivers came together for the WDA’s Externally-Led Patient-Focused Drug Development m...
08/06/2026

Earlier this year, patients and caregivers came together for the WDA’s Externally-Led Patient-Focused Drug Development meeting to describe the real-life impact of Wilson disease.

They spoke about delayed diagnosis, liver and neurologic symptoms, fatigue, psychiatric challenges, treatment side effects, and the complicated routines required to manage the disease. They also shared their hopes for treatments that are easier to take, require less monitoring, and cause fewer side effects. More than 350 people attended the meeting, including 40 FDA staff.

Their voices will continue to make an impact through the Voice of the Patient report, which has been submitted to the FDA and will be released publicly soon. The report summarizes the community’s experiences, challenges, and priorities for future treatments.

Learn more about the meeting and the people who made their voices heard:
https://wilsondisease.org/el-pfdd-meeting-for-wilson-disease-patients-and-caregivers-make-their-voices-heard/

We’re excited to spotlight Valentina Medici, MD, MAS, FAASLD, a liver specialist and researcher who has dedicated much o...
08/04/2026

We’re excited to spotlight Valentina Medici, MD, MAS, FAASLD, a liver specialist and researcher who has dedicated much of her work to Wilson disease and other liver conditions related to metabolism.

Dr. Medici studies why Wilson disease can look different from one person to another and how research can lead to better diagnosis and treatment.

At this year’s conference, Dr. Medici will present:
“Fixing the Root Cause: Gene Therapy and Gene Editing for Wilson Disease”

Her talk will explain new research approaches that aim to address the genetic cause of Wilson disease — and what these advances could mean for the future of care.

Join Dr. Medici and other leading Wilson disease experts for a full day of education, connection, and learning in Chicago.

📍 Chicago, Illinois
📅 September 26, 2026

Learn more about the conference and register:
https://wilsondisease.org/get-involved/events/annual-conference/

The Wilson Disease Association has a limited supply of donated penicillamine available through its International Medicat...
07/30/2026

The Wilson Disease Association has a limited supply of donated penicillamine available through its International Medication Assistance Program for eligible patients living outside the United States.

If you or someone you know may benefit from the program, please email [email protected]. Patients or their representatives should include the following information about the prescribing physician:

• Name
• Email address
• Phone number
• Mailing address

Our WDA-MAP Coordinator will guide applicants through the process and work with MAP International and the prescribing physician to coordinate medication delivery.

Please note that international shipments require physician involvement and may be subject to import permits, customs requirements, and shipping timelines.

Questions? Contact [email protected].

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224 W 35th Street , STE 500 #676
New York, NY
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