Co-Director: Charuta Joshi, MBBS at Children’s Hospital Clinic Frequency: Weekly on Mondays and Tuesdays The mission of the TSC Clinic is to provide multi-disciplinary comprehensive care of children with TSC and to promote research, education and awareness about TSC. Age Range Seen: Children and Adults. Age Range Seen: Children and young adults up to age 21 years. Clinic Frequency: Daily Director: Hope Northrup, MD Age Range Seen: Adults only. Age Range: Children and Adults up to age 60 years. Coordinator: Jan Paolini, RN, MSN, PNP Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children Age Range Seen: Children and young adults up to age 21 years old Director: Steven Wolf, MD What are the best medical or surgical approaches to treat brain, eye, and kidney disease? Please read our, Tuberous Sclerosis Clinic at Children’s National, The Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital, TSC Clinic at Children’s Hospital of Michigan, TSC Clinic at Nationwide Children’s Hospital, Michal.LeitnerSanigou@sheba.health.gov.il. Dallas Director: Samir R. Karia, MD Orlando Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont. For information or to schedule an appointment call (512) 628-1855. Clinic Frequency: Every first and third Sunday For Clinic Information and to schedule an appointment call +52 8183483704. Coordinator: Lisa Koneazny, RN, BSN The TSC clinical consensus guidelines consist of a series of objective metrics that help measure a clinic’s commitment to TSC care, the availability of particular medical specialties relevant to TSC, the availability of particular educational resources and whether or not a clinic participates in clinical trials. The TSC sub-specialists also see TSC patients most days of the week. Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Frequency: Monthly Coordinator: Laura Sutherland, RN Director: Francis DiMario, Jr., MD Director: Ana Melikishvili, MD Dr. Porter and Dr. APNNA – Arizona Pediatric Neurology & Neurogenetics Associates For Clinic Information and to schedule an appointment call (314) 268-2737. Age Range Seen: Children and Adults Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Age Range Seen: Children and adults A letter of agreement is required prior to inpatient admissions. *Adults will be seen for an initial diagnosis and ongoing care provided you have a primary care physician. TSC Clinic at Akron Children’s Hospital Clinic Receptionist: Moran Avraham Learn about tuberous sclerosis complex, a genetic condition with a spectrum of possible symptoms. To schedule an appointment, call (860) 837-7500. For Clinic Information and to schedule an appointment call (704) 403-2786. Richmond For Clinic Information call (913) 696-8254 and to schedule an appointment call ( 913) 696-8950 (ext. Director: Mustafa Sahin, MD, PhD To schedule an appointment, call (434) 924-2706 and ask to speak to Caitlin Jenkins. Clinic Frequency: Pediatrics–2-3 Thursdays a month, subject to change. Coordinator: Linda Lezotte, RN Co-Director: Samuel DeStefano, MD at University Hospital TSC Clinic at Nationwide Children’s Hospital Clinic Frequency: First, second, third, fifth Tuesdays and fourth Thursday every month. TSC Clinic at Prisma Health – Columbia SC Philadelphia Young patients can suffer from tumors in the heart which may result in heart failure or conduction abnormalities. Clinic Frequency: The local practice is to see patients as and when they come. University of Alabama Birmingham Tuberous Sclerosis Clinic TSC Clinic at Connecticut Children’s Medical Center Out-of-State Medicaid Policy: No restrictions. Clinic Frequency: TSC patients are seen throughout Dr. Rosser’s schedule Mondays, Tuesdays and Wednesdays. For clinic information and to schedule an appointment, please call (973) 322-7042. The identification of a TSC Clinic or Center of Excellence does not constitute a recommendation or endorsement of any provider of medical care. Clinic Frequency: Every first Thursday of the month. Out-of-State Medicaid Policy: Requires one-time agreement with UCLA. Co-Director: Surya Prasadarao Rednam, MD, MS Clinic Frequency: Weekly every Wednesday all year round Clinic Frequency: Monthly, every third Tuesday (subject to change). For Clinic Information call (813) 745-3980 and to schedule an appointment call (813) 745-4251. San Diego Administrative Coordinator: Erica Sierra University of Utah TS Clinic Director: Michael Wong, MD, PhD Clinic Frequency: Monthly For more information or to schedule an appointment call Amy Davis at (682) 885-7259. University of Chicago Medical Center Tuberous sclerosis (TS), also called tuberous sclerosis complex (TSC), is a very rare genetic disorder that affects every child differently. Age Range Seen: Children up to age 18 years Coordinator: Nancy Elling, RN, BSN, CPN Montefiore Medical Center For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123. Flexible to meet patient needs. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. For Clinic Information contact Lindsey Rose, LPN at (502) 588-3650, extension 50212. Co-Director: James W. Wheless, MD TSC Clinic at Children’s Hospital of Michigan Director: M. Scott Perry, MD Age Range Seen: New patients up to age 25 years. Coordinator: Lucie Côté RN Director: John J. Bissler, MD Acne-like lesions and pea-sized skin growths, especially on the face, may cause cosmetic disfigurement and psychological difficulties. Director: Steven Sparagana, MD Age Range Seen: Children and young adults up to age 21 years old. Age Range Seen: New patients up to age 25 years. Clinic Frequency: Twice monthly on selected Tuesday afternoons. What determines epileptogenicity in tubers? Coordinator: Paula Klima, RN Cleveland Clinic is a non-profit academic medical center. Denver Clinic Ambassador: Mark Martin, firstname.lastname@example.org Coordinator: None Clinic Ambassador: Sheryl Kubala, email@example.com TSC Clinic at Rainbow Babies and Children’s Hospital, University Hospitals of Cleveland Medical Center Instead, these responsibilities can be delegated to the TSC program where a dedicated team of specialized physicians in one tertiary care center share the medical information of a patient through electronic medical records, and provide individualized care through a specialized team approach. Complex partial seizures Seizures that involve an alteration in a person’s level of consciousness coupled with changes in motor activity (jerking of one extremity or side of the body) and automatisms … Age Range Seen: New patients up to age 21 years. Director: Vinodh Narayanan, MD To schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599. Out-of-State Medicaid Policy: Does not accept for outpatient visits. Los Angeles Clinic Ambassador: Tara Palage firstname.lastname@example.org Co-Director: Melissa Crenshaw, MD Age Range Seen: Children Children’s Hospital of Pittsburgh TS Clinic Jo Anne Nakagawa, Director of Clinical Projects & TSC Clinic Liaison, administers this volunteer program. To make a referral, there are three options: Request a tuberous sclerosis clinic appointment. Director: Rohini Coorg, MD Director: Anuja Jindal, MD, MPH Clinic Ambassador: Brittany Schwaigert, email@example.com or (901) 238-7665 mobile Administrative Coordinator: Chitra J. Narayanan Co-Director: Monika Madan, MD Administrative Coordinator: Mary Jo Shirley The pediatric neurologist manages neurological problems, such as seizures. Charlotte For Clinic Information and to schedule an appointment call (206) 987-2078. Care, as needed, to provide the best treatment option Clinic services, billing and insurance should considered. 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