TSC Clinic at Rainbow Babies and Children’s Hospital, University Hospitals of Cleveland Medical Center Denver University of Alabama Birmingham Tuberous Sclerosis Clinic    This technique is useful for evaluation for epilepsy surgery. Coordinator: Carol Schafer, BSN, RN Co-Director: Rajsekar (Raj) Rajaraman, MD For more information and to schedule an appointment call (551) 497-5470. Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Coordinator:  Brooke Henry, RN, BSN Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC Age Range Seen: Children and Adults. Coordinator:  None Clinic Frequency: Thursdays, every 2-3 weeks. Coordinator: Megan Gustafson, MSN, RN, CPNP Clinic Frequency: Pediatrics–2-3 Thursdays a month, subject to change. Clinic Ambassador: Kari Ihle, kariihle77@gmail.com, (612) 281-5759 For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266. Cleveland Clinic Children's is dedicated to the medical, surgical and rehabilitative care of infants, children and adolescents. Age Range: Children and Adult. Physicians in the Tuberous Sclerosis program are at the leading edge of TSC treatment and are committed to research and education to improve the lives of patients and families with TSC. Atrium Healthcare TSC Clinic at Levine Children’s Hospital Clinic Ambassador: Lana Vidal, lana_kozlova@hotmail.com, (201) 565-7662 Co-Director: Carol Greene-Roethke, CRNP-APRN 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. Age Range Seen: Children and Adults Clinic Frequency: Monthly, the last Tuesday of the month A letter of agreement is required prior to inpatient admissions. Clinic Frequency: Weekly on Mondays and Tuesdays RN Phoenix Director: Michael Wong, MD, PhD Clinic Ambassadors:  Nilsa Roberts, nilsaa26@aol.com Patients see Dr. Noyman on a more frequent basis. Director: Aimee Luat, MD To schedule an appointment contact Sabrina Dekel at SabrinaDe@clalit.org.il or 972-8-6245469. To avoid confusion with scheduling please specify you or your child has TSC. Coordinator: Jamie MacDougall, RN, BSN, CPN Clinic Frequency: First and third Friday every month. Coordinator: Maria Lewek, RN, BSN Out-of-State Medicaid Policy: Accepts all that get to them. TSC Clinics The Tuberous Sclerosis Alliance (TS Alliance) supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients. Age Range Seen: New patients under age 18 years. To schedule an appointment, call the TSC Center at (212) 342-1036. Clinic Frequency: Daily Miami   For more information about the UAB TS Clinic and to schedule an appointment, contact Jessica Krefting, BSN, RN at (256) 533-0833. Coordinator: Christina Schaffner, RN Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Dell Children’s Hospital Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Co-Director: Chad Jacobsen, MD Clinic Frequency: Monthly, the first Tuesday. For more information or to schedule an appointment, call (615) 936-5536. We are a team of physicians dedicated to treating all aspects of Tuberous Sclerosis Complex (TSC) and other neurodevelopmental disorders. These are called cardiac rhabdomyomas tumors and generally decrease in size with age. Tuberous sclerosis (TWO-bur-uhs skluh-ROH-sis), also called tuberous sclerosis complex, is an uncommon genetic disorder that causes noncancerous (benign) tumors — unexpected overgrowths of normal tissue — to develop in many parts of the body. Be’er Shiva Director of Neurology Subspecialty Service: Vinodh Narayanan, MD Your primary contact person for information and appointments is the Tuberous Sclerosis Clinic coordinator. Clinic Frequency:  A multidisciplinary clinic is held every second Thursday of each month. Coordinator: Sarah MacDonald, RN, BSN, CPN Click one of the following letters to be directed to the corresponding state name. Clinic Frequency: Monthly Cook Children’s Clinic for Tuberous Sclerosis Complex To schedule an appointment call Dara Bell at (248) 551-7445. When this happens, tumors block the flow of spinal fluid. Ft. Worth For more information or to schedule an appointment call (909) 835-1810. Hackensack Dedicated focus. A focus on families, with specialists who address the needs of adult and pediatric patients. Tampa The TS Alliance does not accredit any TSC Clinic or TSC Center of Excellence, and the TS Alliance does not directly provide or guide any clinical care or medical decision-making. Co-Director: James W. Wheless, MD Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 Co-Director: Orrin Devinsky, MD The Tuberous Sclerosis Alliance (TS Alliance) recognizes clinics that aid in more effectively treating TSC patients while meeting required national standards of excellence. For clinic information contact Nicole Forster at (416) 586-4800 extension 2734 and to schedule an appointment contact adultgenetics@uhn.ca or Tabinda Nazeer at (416) 586-4800 extension 5454. Coordinator: TBN Age Range Seen: New patients up to age 21 years. Columbia Jerusalem Posted information is subject to change without notice. For Clinic Information and to schedule an appointment call (704) 403-2786. Nashville Director: Rohini Coorg, MD Age Range Seen: Children and Adults To schedule an appointment, call the Neurology appointment line at (202) 476-3611. *Adults will be seen for an initial diagnosis and ongoing care provided you have a primary care physician. Coordinator: Maria Bonanni, MSN, CRNP and Megan Lawrence (administrative) For clinic information and to schedule an appointment, please call (973) 322-7042. For information or to schedule an appointment call (512) 628-1855. Age Range Seen: Children and adults We can help you understand the illnesses associated with tuberous sclerosis and offer treatment through a TSC Alliance certified clinic managed by our nephrologists, urologists, neurologists and neurosurgeons. CORONAVIRUS: DELAYS FOR ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19 TESTING. Clinic Frequency: One full Friday per month with additional clinics added as needed. To schedule an appointment, call Maria Coronel at (858) 966-5819. Clinic Frequency: Weekly on Wednesday. Our clinic is designated and affiliated with the Tuberous Sclerosis Alliance. Memphis Hospital Universitario “José Eleuterio González’ Universidad Autónoma de Nuevo León Questions about clinic services, billing and insurance should be directed to the TSC clinic staff. TSC Clinic at Institute of Neurology at St. Barnabas  We hope that you will find this website informative and helpful. The Tuberous Sclerosis Alliance has recognized our center since 2004 for its comprehensive care. Age Range: Children and Adults. Coordinator: Michal Leithner Sanigou Director: Kevin C. Ess, MD, PhD Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Coordinator:  Kari M. Vanderslice, BSN, RN Multi-Disciplinary Tuberous Sclerosis Program By using this site you agree to our use of cookies. Through the Tuberous Sclerosis Alliance, we are able to provide families with information to understand TSC and better communicate with their child’s school and teachers. Director: Steven DeRoos, MD Co-Director: Dawn Siegel, MD Clinic Frequency: Monthly, second Tuesday and third Thursday. Co-Director: Monika Madan, MD Director: Eric Ségal, MD TSC Clinic at Prisma Health – Columbia SC Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont. Often undetected. Clinic Frequency: Weekly on Thursdays. Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children CHU Sainte-Justine, University of Montreal Durham For information on the clinic, email Wynne Bird at Bird@childrenscolorado.org; The Tuberous Sclerosis Alliance is on a mission to find a cure for TSC while improving the lives of those affected. Co-Director: Erika Axeen, MD (Pediatrics) Coordinator: Joyce Masterton, ANP Director: Josiane LaJoie, MD Coordinator: Shannon Brophy, RN, MSN, ANP-BC *Adults with TSC and seizures. Age Range Seen: Children and young adults up to age 21 years old. Coordinator: Raeann Moore, RN Clinic Frequency: Monthly, every second or fourth Wednesday. Age Range Seen: Children and adults Clinic Frequency: Second Monday every month – afternoon clinic. For Urgent Appointments contact Raeann Moore, RN at 616-267-2954. Administrative Coordinator: Mariana Villagran Most of these tumors are considered benign, or noncancerous. TSC Center of Excellence at UCLA Clinic Frequency: Every 4 to 8 weeks. ^Due to overwhelming interest in our monthly multidisciplinary TSC program, we are now offering patients the opportunity to schedule with all the necessary subspecialists in individual clinics within a short time frame, possibly same-day. Coordinator: Linda Lezotte, RN We invite you to complete this survey any time after you’ve been to the TSC Clinic. Director: Katherine Van Poppel, MD Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Coordinator: Jennifer McCrave, RN, BSN, CNRN To schedule an appointment call (501) 364-1850. Clinic Ambassadors: Reiko Donato donator@bellsouth.net Age Range Seen: Children and Adults Age Range Seen: Children and Adults for general TSC care and genetics. Coordinator: Julie Engel, RN Co-Director: Muhammad Zafar, MD The Tuberous Sclerosis Clinic provides a comprehensive diagnostic evaluation for TSC, including history, physical exam, laboratory testing, and radiographic studies. Director: Anuja Jindal, MD, MPH For more information and to schedule an appointment, call (206) 215-1440; Fax (206) 215-1441. Learn about tuberous sclerosis complex, a genetic condition with a spectrum of possible symptoms. Children’s Healthcare of Atlanta Bronx To schedule an appointment please call (617) 726-0241. Children’s Hospital of Pittsburgh TS Clinic Coordinator: Mary Sheerin, RN, BSN Neurocutaneous Disorders Clinic at Johns Hopkins All Children’s Hospital Montreal, Quebec Pittsburgh 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. Coordinator: Nicole Forster, MSc, CGC Clinic Frequency: Third Thursday of each month. Age Range Seen: Children and Adults Age Range Seen: Children and young adults up to age 21 years. For further questions regarding these programs contact Financial Services at (513) 636-0201. Clinic Frequency: Daily. Director: Francis DiMario, Jr., MD Director: Himanshu Kaulas, MD Tuberous Sclerosis Clinic at Children’s National Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic Coordinator:  Zoë Allen, BSN, RN Detroit For Clinic Information call (813) 745-3980 and to schedule an appointment call (813) 745-4251. Clinic Frequency: TSC patients are seen two designated Fridays per month for pediatrics and during routine clinic days for adults. Director: Vinodh Narayanan, MD This option minimizes wait times and gives patients all the same care and treatment as the Multidisciplinary Clinic. Below, find frequently asked questions about Tuberous Sclerosis Complex: Tuberous sclerosis complex (TSC) is a genetic condition with a spectrum of clinical expressions. Charlottesville Coordinator: Jan Paolini, RN, MSN, PNP Clinic Frequency: Weekly on Fridays and every other Tuesday, as well as on an as needed basis. Age Range Seen: Children and Adults. Clinic Frequency: Monthly. Beginning December 19, 2019, the fourth Thursday clinic permanently changes to the third Thursday. Reviewed by a Cleveland Clinic medical professional. Age Range Seen: Children and Adults*. Director: Elizabeth Thiele, MD, PhD In order to qualify as TSC Clinic or TSC Center of Excellence, a clinic must follow established TSC clinical consensus guidelines developed by an international group of clinical experts, many of whom are members of the TS Alliance Professional Advisory Board. St. Petersburg For Clinic Information contact Lindsey Rose, LPN at (502) 588-3650, extension 50212. Age Range Seen: Children and Adults* For information or to schedule an appointment call Kari Vanderslice at (832) 822-5046. Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. Montreal, Quebec Co-Director: Sarah Kiel, RN, MSN, CRNP-PC/AC The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you. Tuberous Sclerosis is a multisystem disorder with a highly variable clinical presentation. There is no cure for TSC, but when we deliver care to patients via our TSC Program, we coordinate services that accommodate their ongoing needs from a staff of professionals who understand the condition. TSC Clinic at Nemours/duPont Hospital for Children Interim Director: O. Carter Snead, MD, FRCP(C) TAND Unit Director: Tanjala T. Gipson, MD, Interim Director: O. Carter Snead, MD, FRCP(C), Coordinator: Valerie W. Chan, RN, BScN, CNN(C), Age Range Seen: Children up to age 18 years. Your comments in this online survey will be shared with the TSC Clinic Director and staff. Clinic Frequency: Bi-weekly, first and third Wednesday of the month. For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org. Cleveland Clinic's TSC Program will collaborate with the referring physicians, depending on the patient and family needs, and can serve as an expert and consultative arm while ongoing care is continued locally. A world-class reputation for diagnosing and treating TSC-related conditions, including one of the largest programs in the world for epilepsy evaluation, epilepsy surgery and treatment. Coordinator: Samantha Moore, RN The Tuberous Sclerosis Alliance has recognized our clinic for our multidisciplinary and collaborative approach. Age Range Seen: Children and young adults up to age 21 years old. Out-of-State Medicaid Policy: Requires one-time agreement with UCLA. Clinic Frequency: Daily as Needed Every 4th Thursday afternoon. Informs and updates people with TSC and their families about the TS Alliance and the, If you have a compliment or complaint about a TSC Clinic you’d like to share with the TS Alliance, please download our. Farmington clinic, and offers diagnosis and care to 388 affected children and adults from various parts of the country (Peron et al., 2018). Age Range Seen: Children and Adults. Clinic Frequency: Monthly. Both children and adults can be seen in these clinics. Clinic Frequency: Monthly Director: Michal Tzadok, MD For information about the TSC Clinic contact Nancy J. Elling, RN, BSN, CPN at (571) 405-5961. Age Range Seen: New patients 12 years and older. While the tumors typically are non-cancerous, they can cause serious health complications if left untreated. Dayton Clinic Ambassador: Tara Palage tara.palage@yahoo.com TSC Clinic at Neural Clinic Mexico For information and to schedule an appointment call (314) 454-4352. Tel Hashomer The TSC sub-specialists also see TSC patients most days of the week. Rarely, these tumors may become malignant. Out-of-State Medicaid Policy: Accepts any that will reimburse. Director: Susan Koh, MD at Children’s Hospital Age Range Seen: Children and Young Adults up to age 25 years old. Hearing that your child has tuberous sclerosis complex (TSC), a rare genetic condition, is stressful. Cleveland Coordinated care so patients can access multiple services through one channel. For Clinic Information and to schedule an appointment call +52 8183483704. Columbus To schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599. Improve your user experience this is the support they need is the cause of the month Dr. Michael.. Skin lesions resembling severe acne may be the presenting feature ( 860 ) 837-7500 provide., cardiology, nephrology, psychiatry and psychology ) half-day on Tuesday third... 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