Finding a new treatment for any disease is a long and expensive process, and it is even more challenging for rare diseases like tuberous sclerosis complex (TSC). To speed up research and make progress on developing treatments, the TSC Alliance has established a research strategy that focuses on the needs and experiences of people living with TSC. The TSC community knows best how the disease negatively affects their lives, and their involvement is crucial for any researcher or company working on potential treatments.
The TSC Alliance awards research grants to early-career scientists and works closely with researchers, healthcare providers, and the TSC community to build shared resources. These resources include medical data and biological samples, like blood and tissue, which are shared with scientists worldwide to help with TSC-related research. The organization also partners with researchers and the pharmaceutical industry to test new drugs and therapies in laboratories before they can be tested on humans. Before and during human clinical trials, the TSC Alliance helps design trials that are meaningful to the TSC community without being overly burdensome for participants.
The TSC Alliance continues to shape its strategy based on the needs of the TSC community, working towards a future where everyone affected by TSC can live their fullest lives.
Help the TSC Alliance accelerate TSC research by donating to the 50 Forward Fund!