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TSC Alert

Archive for the ‘News’ Topic

What’s With the New Look?

  |  News

On Sunday May 16, the Tuberous Sclerosis Alliance formally unveiled a new brand and new name: TSC Alliance. We also introduced a new tagline, “Hope no matter how complex.”

TSC Alliance Partners with NeurologyLive™

  |  News

The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe

Heart of Genetic Counseling Award

  |  News

Each year, the National Society of Genetic Counselors and Invitae sponsor The Heart of Genetic Counseling Award, which honors excellence in patient care provided by genetic counselors during some of the most challenging moments of a patient’s health journey.

TSC Alliance Partners with NeurologyLive™

  |  News

The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe

Seeking Volunteers for a Study Evaluating Perspectives on the Return of Individual Research Data

  |  News

Are you interested in participating in research? The University of Rochester is studying the topic of sharing research information with research participants. Participants receive $40. You May Qualify If You Are A caregiver of an individual with a rare disease A clinician researcher A clinician An IRB representative A Sponsor or drug development company representative Participation Involves Completing a recorded zoom interview with a member of the study team. Interviews take 60-90 minutes. During the interview, you will be asked about your ideas and suggestions related to sharing research information with research participants. Interested? Call the study team at 585-276-3987 or…

TSC Alliance Partners with NeurologyLive™

  |  News

The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe

New Young Investigator Fellowship Opportunity with the DSC

  |  News

This fellowship opportunity is open to MD, PhD, or MD/PhD applicants. Areas of potential research include but are not limited to: iPSC derived neuronal modelling of TSC, characterization of the natural history of TSC, and development of endpoints for clinical trials in TSC.

COVID-19 Considerations for TSC Medical Professionals

  |  News

UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/). The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma.  The website provides clear and easy-to-understand information for: People who have never had COVID-19 who may be interested in joining a vaccine or other prevention trial People who have COVID-19 and want to participate in a treatment clinical trial People who have…

EPISTOP Results on Prevention of Epilepsy in TSC infants

  |  News

EPISTOP (Long-term, prospective study evaluating clinical and molecular biomarkers of EPIleptogenesiS in a genetic model of epilepsy – Tuberous sclerOsis comPlex) is a European consortium that has been studying the potential benefits of early treatment with vigabatrin to prevent seizures in TSC. Trial results were just published in the Annals of Neurology.