Videos and Webinars
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2023 Webinar Recordings
Presenters: Heather Harden, Nurse Practitioner and Eric Beresford, Vice President and Head of Medical Affairs, Nobelpharma America
This webinar session guides attendees in mapping out an individual’s journey with facial angiofibroma, including :
- The diagnosis of facial angiofibroma associated with TSC
- The social and psychological impact of facial angiofibroma
- Taking care of your skin
- What to know about treatments
For specific product information, contact Nobelpharma Corporate at firstname.lastname@example.org.
Shelly Meitzler, Director, Outreach & Support, and Elizabeth Skufca, Community Programs Manager, discuss the ABCs and 1, 2, 3s of preparing for back to school.
Presented by: Nicole McDonald, PhD, Assistant Professor, UCLA Division of Child and Adolescent Psychiatry, David Geffen School of Medicine at UCLA and Shafali Jeste, MD, Chief, Division of Neurology, Co-Director, Neurological Institute, Las Madrinas Chair, Children’s Hospital Los Angeles (CHLA).
This webinar discusses behaviors in TSC and the Remote Assessment and Intervention for Behavior Problems in Kids With TSC (RAINBOW). The study is seeking to learn more about behavior problems in young children with tuberous sclerosis complex. The study is looking to enroll children between 3-6 years old whose primary spoken language in the home is English or Spanish, who can live anywhere in the United States.
Presented by: Peter Crino, MD, PhD, TSC Clinic Director at the University of Maryland Medical Center and Ashley Pounders, MSN, FNP-C, Director, Medical Affairs at the TSC Alliance
Dr. Crino and Ashley provide an overview of SUDEP, including what you need to know to have informed conversations with your medical team about your/your loved one’s risk. They also share resources for grief support and how you can support TSC research through tissue donation.
The TrustTSC trial is exploring whether treatment with investigational ganaxolone can reduce the frequency of seizures associated with TSC in children and adults. The study is currently enrolling in the US, France, Italy, Spain and Germany with future plans for the UK and Belgium.
This webinar summarizes a recent publication about the racial differences in the dermatological manifestations of tuberous sclerosis complex.
2022 World TSC Conference Videos
In 2022, the TSC Alliance hosted five webinars focused on research and featuring known experts in the TSC community as part of our Research Education Webinar Series. These free 1-hour presentations included an open question-and-answer period and offered valuable information on TSC research, clinical trials, and more. You can view recordings from the 2022 Research Education Webinar Series here.
2021 E-Webinar Series
In 2021, the TSC Alliance hosted a wide range of virtual educational activities, grouped by Life Stages, Research Updates, TSC-Associated Neuropsychiatric Disorders and Transition Workshops. You can view recordings from the 2021 E-Webinar Series here.
COVID-19 Webinar and Town Hall Series
The TSC Alliance continues to work diligently on behalf of everyone affected by tuberous sclerosis complex (TSC) during this challenging time. Throughout 2021, the TSC Alliance offered a series of webinars, open forums and virtual Town Halls to get timely information to help you manage a wide range of issues as we all work together through the COVID-19 pandemic. You can view recordings of previous COVID-19 webinars here.
2020 Virtual TSC & LAM Conference Videos
2018 World TSC Conference Videos