The TSC Alliance’s TSC Connect (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 tuberous sclerosis complex. 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.
United States (This position can be done from home.)
4 – 10 hours annually. There are quarterly phone calls to equip volunteers with relevant information (one hour each call), and you may receive a phone call or phone calls throughout the year from people in your area who desire to connect with another individual or family affected by TSC.
Skill Set Required:
The willingness and ability to communicate with other individuals and families affected by TSC via phone, email or locally face-to-face if desired.
Shelly Meitzler, Regional Program Manager East, firstname.lastname@example.org.