Wilson Disease Association

We’re pleased that Lana Escamilla, a Wilson Disease Association Board member and #Wilsondisease patient has the opportunity to speak before the #FDA on the patient perspective of participating in a #clinicaltrial and the informed consent. #raredisease

Last year, the #Wilsondisease community received the disappointing news that Alexion, AstraZeneca Rare Disease terminated its WD drug program. The investigational drug license has now been picked up by Monopar Therapeutics Inc. #tetrathiomolybdate

The Wilson Disease Association is pleased to be counted among the member organizations of National Organization for Rare Disorders and attend its 2024 #NORDSummit.

We are grateful for the tremendous support received from industry sponsors, family foundations and individual contributors who made the 2024 Wilson Disease Association Conference possible. The partnership between #patientadvocacy and industry is important as we advance #treatment and understanding of #Wilsondisease. We appreciate the interest from company representatives in the pre-clinical stage of developing possible #therapies for this #rare #genetic #liverdisorder for the future. It was a great opportunity to learn from one another! Ultragenyx, Orphalan, Vivet Therapeutics, Tanner Pharma Group, Key Proteo, Inc., Arbormed, Prime Medicine, Inc., metaLead

This is the challenging reality of the impact of #Wilsondisease on the parent of an adult child when the diagnosis of this rare #genetic liver disorder is missed and delayed. Thank you Vivet Therapeutics for sharing Travis’ and James’ story. #hepatology #neurology #psychiatry

Congratulations 🎉 to the new Wilson Disease Association Board of Directors and Officers! We’re pleased to have this dedicated team serving on behalf of the #Wilsondisease community advocating for research advances, raising awareness and providing support. President: Rhonda Rowland, Treasurer: Carol Terry, Secretary: Zulma Gonzalez Lombardo Directors: Alice Williams, Lana Escamilla, Edward Tabor, M.D., Carly A., Jean Perog, Rachel Albert, Steve Walsh

We express our gratitude to Dr. Sean Rudnick, the director of the North Carolina Wilson Disease Center of Excellence at Atrium Health Wake Forest Baptist for arranging a remarkable lineup of speakers for our Wilson Disease Association 2024 Conference. We had the pleasure of meeting Dr. Rudnick's team and also had the opportunity to hear from four other directors of #Wilsondisease #CentersofExcellence. We gained knowledge on topics ranging from "What Constitutes a Cure" to "Gut Microbiome and a Copper Conscious Diet." We heard treatment and clinical trial updates from top experts from across the U.S., the U.K. and Spain. Stay tuned for video recordings of their insightful presentations that will soon be accessible on the WDA YouTube channel. A special thanks to WDA Board member Lana Escamilla who provided the patient's perspective to clinical trials in a conversation with Michigan Medicine's Fred Askari Michael Schilsky, Professor Aftab Ala, Zoe Mariño #hepatology #neurology #psychiatry

Thank you metaLead for your interest in developing a potential therapy for #Wilsondisease. We’re pleased that Michal Shoshan and Valerie Thevenoz could attend our conference in Charlotte, NC! #liverdisorder #raredisease

Who doesn’t like a shout out?! We appreciate Alice Williams and Rhonda Rowland and their work with Key Proteo, Inc. to support efforts to make #newbornscreening a reality for #Wilsondisease. Thanks to Steve Hahn for his tireless work in developing a screening test for our rare #geneticdisorder.

Travis’s story is not uncommon for people with #Wilsondisease. Within weeks, a normal thriving life can disintegrate due to undiagnosed copper poisoning. It can be challenging to diagnose since it masquerades as common #liver, #neurological or #psychiatric disorders. Thank you Vivet Therapeutics for sharing this important story. #genetherapy #raredisease