The TS Alliance's TSC Connect program (formerly the Support Network and Matching Program) is an organized partnership of individuals whose lives have been affected by tuberous sclerosis complex (TSC). The volunteers are committed to offering support and sharing their experiences with others who are faced with the challenges of TSC.
Across the nation, TSC Connect is providing the latest medical information, education and support to those individuals who are seeking understanding about the genetic disorder and offering them words of encouragement and empowerment. Volunteers come to the network with a wealth of knowledge, awareness and experiences.
TSC Connect is designed to connect individuals either by specific geographical area, manifestations, or age of TSC individual, and lets volunteers choose the issues they have personal experience with and are willing to discuss with others. TSC Connect is supported wholly by the TS Alliance Outreach Department.
If you are looking for a TSC Connect volunteer in your area please contact Dena Hook at 1-800-225-6872 or firstname.lastname@example.org. She will be able to provide you with contact information closest to you.
As a TSC Connect network volunteer you are encouraged to provide information about tuberous sclerosis complex based on your personal experience and knowledge but must not provide direct medical, therapeutic or drug recommendations.
Your personal experience in the care and development of an individual with tuberous sclerosis complex will provide meaningful guidance and feedback to an individual, parent/caregiver. Information provided that reflects your personal experiences in the diagnosis, testing and treatments may be shared with others; however, please direct them to qualified medical or therapeutic practitioners.
Sharing knowledge of local supports such as clinics, therapists and doctors you have used can be very helpful, and you may share your experiences with those who contact you. However, it must be clearly communicated that you serve as a volunteer with the TS Alliance and your opinions and comments reflect personal experience and not that of the organization or a medical professional.
If you are interested in volunteering for the TSC Connect, please Dena Hook at 1-800-225-6872 or email@example.com.