Recent Posts
Celebrating Carol Terry: A Life of Resilience, Leadership, and Impact
Date: June 23, 2026 This June, we celebrate the 80th birthday of Carol Terry — co-founder of the Wilson [...]
My Experience Being Pregnant With Wilson Disease
By Carly Albinder, LCSW, WDA Patient Education and Support Director When I started thinking about getting pregnant, I knew [...]
You Are Not Alone: Kelsey’s Journey With Wilson Disease
By Kelsey Pusillo, WD patient and WDA Patient Ambassador Coordinator Early Symptoms and a Life-Changing Diagnosis During my high [...]
EL-PFDD Meeting for Wilson Disease: Patients and Caregivers Make Their Voices Heard
By Edward Tabor, MD, and Sarah Wicks, JD, MPH The WDA organized and led a daylong “Externally-Led Patient-Focused Drug [...]
Zinc and Me
By Rhonda Rowland, WDA President After 20 years of taking over-the-counter (OTC) zinc to treat my Wilson disease (WD), [...]
How One Family’s Wilson Disease Journey Led to a Transformative Legacy
By Rhonda Rowland, WDA President This past spring, I received a phone call that felt like being told we'd [...]
Market Research Survey
A market research study is seeking individuals with Wilson’s Disease to participate in a 60-minute telephone interview about their treatment experiences. The feedback provided will be used to help understand where there is still need for improvement in Wilson’s Disease treatment from the patient perspective. The interviews will also include discussion of a hypothetical new treatment option to understand if there is a fit between what the treatment may be able to offer and the needs in Wilson’s Disease. The hypothesized treatment is not currently in clinical development.
If you or someone you care for has been diagnosed with Wilson’s Disease you may be eligible to participate. Those who qualify and complete the interview will receive $100 for their time and participation. All information and responses will remain confidential.
To see if you qualify or to get more information please fill out this simple form: https://forms.gle/3jxnsTEV3CNf3GjS7
If you have questions or want more information you may also contact Erin M. at erin@pinpointpatientrecruiting.com or 202-350-0933.
