Our webinars are created for patients and caregivers in mind as the primary audience and are designed to provide valuable learning, cutting-edge information, guidance and support related to Wilson disease. These webinars are online sessions moderated by health and medical journalists and include expert speakers who are top medical professionals in the treatment and care of patients with Wilson disease. Patient advocates share their perspectives and video content is included to enhance learning and understanding of the topic. Our live webinars provide the opportunity for the audience to participate by asking questions and participating in polls. Below are recordings of past webinars on topics that continue to be current and relevant to the care and quality of life of people with this rare genetic liver disorder.

New Guidance for the Diagnosis, Treatment and Management of Wilson Disease

It’s a first for Wilson disease: a guidance that balances scientific data with expert experience to help doctors better spot this bewildering genetic liver disease and give patients the best possible care. This new Wilson Disease Guidance, is the most up-to-date communication yet, that’s published by the American Association for the Study of Liver Diseases (AASLD). It provides the latest scientific information on diagnosis, treatment and monitoring – with the added bonus of expert opinion. It was put together by an international team of 9 experts in Wilson disease – a team that not only included liver specialists – but also a copper expert, dietitian, neurologist and psychiatrist.

Moderator: Rhonda Rowland is a medical journalist, filmmaker, WDA board member and patient.

Speakers: Michael Schilsky, MD and Eve Roberts, MD, PhD, co-led a team of specialists to create new AASLD practice guidance on Wilson disease. Dr. Schilsky directs the Liver Transplant program and WD Center of Excellence at the Yale Medical Center. Dr. Roberts specializes in pediatric liver disease and was on the Toronto team that identified the WD gene. Both are members of the WDA’s Medical Advisory Committee.

What does copper conscious eating mean for a person with Wilson disease? When diagnosed with the genetic liver disorder, most patients are surprised to learn that copper is in most foods and they have a broken copper regulator. Some people with WD are advised to go on a low copper diet, while others are told to avoid the handful of very high copper foods. What does that mean and how to you put it into practice?

Registered dietitian nutritionists (RDN) are the ideal health professional to help WD patients navigate these questions. In this webinar, Carolyn O’Neil, MS, RDN, award winning food journalist, interviews Ann Marie Rivard, MPH, RDN, CDN from the WDA Center of Excellence at Yale University Medical Center. WD patients, Laura Kalt and Amanda Elsts, share their vastly different dietary experiences.

Whether you were diagnosed decades ago or recently and have questions about copper content in the foods you eat, this webinar should not be missed! It’s also helpful to other RDN’s and health professionals who work with Wilson disease patients.

A medical first for Wilson disease: two trials are underway to look at gene therapy as a possible new treatment option. The University of Michigan is in a unique position since it is conducting trials of both potential therapies. In this webinar – also the first for the Wilson Disease Association to host – Michigan’s Dr. Fred Askari explains the similarities and differences between the two trial approaches, who may be a possible study candidate and what this could mean for the future of those diagnosed with this rare genetic liver disease.

To provide a historical perspective to the treatment of WD, this webinar begins with a portion of the documentary, “The Story of Wilson Disease.” The short film is produced by Rhonda Rowland who is also a WD patient, former medical journalist and moderates the webinar.

Speaker: Frederick Askari, MD, PhD directs the Michigan Medicine WD Center of Excellence and is a member of the WDA’s Medical Advisory Committee.

Polling questions that are answered by webinar participants, along with questions from participants, follow the discussion between Rhonda and Dr. Askari. To find out more about the gene therapy trial sponsored by Vivet/Pfizer and the trial sponsored by Ultragenyx please visit www.clinicaltrials.gov and search for “Wilson Disease”.