Tuberous sclerosis complex (TSC) is a complicated disorder that requires lifelong care from a variety of specialists. The TSC Alliance provides the resources below to connect healthcare providers with TSC experts and give them the resources to offer the highest quality of care to their patients.
If you have any questions or need more information about diagnosis, surveillance, and management of TSC, contact TSC Alliance Director, Medical Affairs Ashley Pounders, MSN, FNP-C, at firstname.lastname@example.org or by calling 1-800-225-6872.
Diagnosis, surveillance and management recommendations
The most current consensus guidelines are from the 2021 peer-reviewed publication and are available here.
The TSC Alliance has offered TSC Clinic designations to the institutions listed here to help serve as a resource for the TSC community to identify where comprehensive clinical care for people with TSC is available.
The TSC Alliance does not accredit any TSC Clinic or TSC Center of Excellence, and the TSC Alliance does not directly provide or guide any clinical care or medical decision-making. None of the information provided by TSC Alliance, including the identification of TSC Clinics or TSC Centers of Excellence, is intended as medical advice and should not be relied upon as a substitute for professional consultation with a qualified healthcare provider familiar with a patient’s medical needs. The identification of a TSC Clinic or Center of Excellence does not constitute a recommendation or endorsement of any provider of medical care.
The TSC Alliance invites healthcare professionals affiliated with a TSC Clinic, TSC Center of Excellence, or University Medical Center to subscribe to our new private listserv: email@example.com. Its primary purpose is for members to pose TSC-related cases or questions to their peers for feedback. Members may also use the listserv to seek opportunities for collaboration on TSC-related projects. The listserv will be monitored to ensure it is being used for appropriate communications.
Please note: This listserv is meant for healthcare professionals ONLY. For all general TSC information, you can reach out to our support navigators at firstname.lastname@example.org. Healthcare providers can reach out to Ashley Pounders, MSN, FNP-C at email@example.com for any questions.
How to subscribe
Email Ashley Pounders at firstname.lastname@example.org who will add you as a member. You should receive a “Welcome to list p2p” email from Groups List Manager email@example.com to confirm your membership.
Key medical publications
The following papers are available free of charge with open access to anyone in the world. The TSC Alliance encourages sharing these links, or a link to this page (tscalliance.org/consensus) with healthcare providers. Any future updates to these recommendations will also be posted on this page.
In this activity, a pediatric neurologist and epilepsy specialist, along with another epilepsy specialist involved in managing patients with TSC, share their insights on the current management strategies for TSC-associated seizures and the potential for preventing or delaying seizures in patients with TSC, and review emerging treatment options. Plus, hear from a caregiver of a patient with TSC on her experience and how novel treatments may improve outcomes.
This activity is jointly provided by USF Health and touchIME.
Professional Advisory Board
The TSC Alliance’s Professional Advisory Board (PAB) is comprised of all TSC Clinic Directors as well as select specialists in the various manifestations of tuberous sclerosis complex.
The roles, term limits and current PAB member list will be available in early 2024.