TSC Alert

Archive for October, 2019

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials. You can find the tool on our website here. Are you conducting a study involving patients with TSC that isn’t listed in the online tool? Contact Zoë Fuchs, TSC Alliance Science Project Coordinator, at zfuchs@tscalliance.org.

Come See Us at Upcoming Meetings and Conferences

The TSC Alliance will be exhibiting at several upcoming meetings this year: American Academy of Pediatrics National Conference and Exhibition in New Orleans, LA (Exhibit Dates: October 26-28, Booth Number: 546) American Society of Nephrology Meeting in Washington, DC (Exhibit Dates: November 7-9, Booth Number: 2906) American Epilepsy Society Annual Meeting in Baltimore, MD (Exhibit Dates: December 7-9, Booth Number: 949) If you’re attending any of these meeting be sure to stop by our booth and say hello!

Contribute to a Study About Standard Neurological Care in TSC Children

Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic behavior with significant impact on the daily life of families with this condition. We are currently conducting an inquiry study about a worldwide standard practice of neurological care of children with TSC and we would like to invite you to take part in this study. Your name/site has been selected for this survey due to your presence at the TSC conferences in the last 3 years or was indicated by…

TSC Biosamples Available at No Cost to Researchers

re you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases, we can ship these samples at no charge to the investigator. To date, we have shipped 749 samples for use in diverse projects, ranging from quantification of sphingolipids in plasma to investigating mitochondrial DNA heteroplasmy.