TSCi Improving Care Project

Beyond the Guidelines: How we can improve health care for people with tuberous sclerosis complex (TSC) around the world?

Through the TSCi Improving Care Project, we are working to identify ways TSCi could improve the health care available to people with TSC around the world.

The project aims to:

• Understand what individuals with TSC and their caregivers value in TSC care
• Understand the care available to people with TSC around the world
• Identify key gaps in care around the world
• Identify initiatives to bridge the gap in care
• Identify key research questions to be explored in the future

Exploration Questions

Timeline

New TSCi Publication on Improving Healthcare for People with TSC Around the World

TSC International is proud to present the publication, “Beyond the Guidelines: How We Can Improve Healthcare for People with Tuberous Sclerosis Complex from Around the World,”  featured in Pediatric Neurology. This paper examines the state of TSC care around the world, identifies gaps in TSC care and makes recommendations for how TSC organizations and key stakeholders can work together to overcome barriers in TSC care. This publication is part of TSCi’s Improving Care Project looking at global TSC care, and provides the patient organizations’ perspective on the new TSC Clinical Consensus Guidelines.