Wilson Disease Association

Join me and Northeast Ohio Liver Alliance on Thursday, July 11 at 6 PM EST for a rare disease webinar focusing on Wilson disease and Progressive Familial Intrahepatic Cholestasis (PFIC) Agenda: Fred Askari University of Michigan Health and Member of WDA’s Medical Advisory Committee, will discuss clinical aspects of Wilson disease. I will discuss the patient and caregiver journey. Naim Alkhouri, MD, FAASLD, MD, FAASLD CMO Arizona Liver Health will discuss clinical aspects of PFIC. Emily Ventura, executive director of the PFIC Network will take us through the patient and caregiver journey This webinar is free and open to healthcare providers and any person with a connection or interest in Wilson disease or PFIC. Registration link below: https://lnkd.in/gQgpZ8Xv Thanks to Northeast Ohio Liver Alliance for hosting this webinar. #rarediseases #Wilsondiseaseawareness

Today is Global #FattyLiverDay! Join us and all our partners around the world as we raise awareness about this serious #liverdisease that is on the rise. #ActNowScreenToday 🗺️ Join the movement:https://lnkd.in/gSCgcPJh #MASH #NASH #fattyliverdisease #healthcare #health #liver #livercommunity #liverstrong

The Orphalan team are excited to be back at the key annual European Hepatology Congress, #EASLCongress2024, in Milan this year. They look forward to engaging with key hepatologists and showcasing their ongoing commitment to improving the lives of people with rare liver disease. The team will be raising awareness about the importance of supporting patients to adhere to lifelong treatment of #WilsonsDisease, a rare genetic condition that primarily affects the liver. Physicians are invited to visit our booth to learn more and participate in discussions on how we can address this significant challenge in Wilson's Disease together.  #liverdiseases #rarediseases #WilsonsDisease #EASL2024 #Orphalan

I’m thrilled to have another opportunity to represent the Wilson Disease Association and talk about the challenges of treatment adherence for people living with my #raredisease on Behind the Mystery and what our #patientadvocacy organization does to help. Thank you to Orphalan for its commitment to raising awareness for #Wilsondisease. The segment airs on The Balancing Act later this summer – stay tuned for dates!

📰 News alert 📰Vivet Therapeutics presents interim data on its Phase 1/2 GATEWAY trial, evaluating the safety, pharmacodynamics, and efficacy of its lead program VTX-801 for the treatment of #WilsonDisease (WD) at EASL | The Home of Hepatology Congress 2024! Key highlights: 📢 VTX-801 increased ceruloplasmin ferroxidase activity and improved liver histology 📢 Encouraging safety and tolerability with no serious adverse events reported #Vivet has successfully dosed the first patient with a higher intravenous dose of lead program, VTX-801 in Cohort 2 and is hoping for a more robust, pharmacodynamic response at a much higher magnitude. Stay up to date on the trial by following Vivet Therapeutics! Read the press release linked in the comments below 📜 #EASLCongress #EASLCongress2024 #AAVGeneTherapy #GenomicMedicines #CellandGeneTherapy #GenomeEditing #CGT

What's new in our latest Pediatric & #Rare Liver Diseases News? 1️⃣ A research and innovation hub at the BAREinc.org Symposium in Stanford, CA 2️⃣ New biomarker identified for infants affected by alpha-1 antitrypsin deficiency 3️⃣ Mayo Clinic’s new strategy for -omics technology can facilitate personalized health plans for rare diseases And so much more! 📚 Read all the updates about the cutting-edge technology in #RareLiverDisease that could improve prompt #diagnosis, ongoing feedback, and effective interventions: https://lnkd.in/gPVEZZef #LiverHealth #PatientAdvocacy #liverdisease