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What you need to know about TSC. We hope that you will find this website informative and helpful. Age Range Seen: Children and Adults Clinic Frequency: Weekly The Tuberous Sclerosis Alliance has recognized our center since 2004 for its comprehensive care. Clinic Frequency: Weekly on Thursday at Children’s National Medical Center in Washington DC and monthly on the second Monday at the Regional Outpatient Center in Fairfax, VA. Director: William McClintock, MD We do not endorse non-Cleveland Clinic products or services. Your comments in this, If you have any questions, contact Jo Anne Nakagawa at. 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. Co-Director: Sarah Kiel, RN, MSN, CRNP-PC/AC TSC Clinic at Novak Center/University of Louisville Toronto, Ontario Clinic Frequency: Daily as Needed TSC Clinic at Boston Children’s Health Physicians/Maria Fareri Children’s Hospital Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC Coordinator: Lorna Justesen, RN, BSN The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt Clinic Ambassador: Rebecca Racenet, rebecca.racenet@gmail.com, (907) 357-5160 Jo Anne Nakagawa, Director of  Clinical Projects & TSC Clinic Liaison, administers this volunteer program. Age Range Seen: Children and Adults* Clinic Frequency: Every second Thursday. For Clinic Information and to schedule an appointment call (704) 403-2786. Clinic Frequency: One full Friday per month with additional clinics added as needed. For TSC Clinic information and to schedule an appointment call Loretta Dunn at (919) 668-4835. Denver Policy, Cleveland Clinic is a non-profit academic medical center. Director: Lily H. Tran, MD TSC Clinic at Helen DeVos Children’s Hospital A letter of agreement is required prior to inpatient admissions. Director: E. Steve Roach, MD To schedule an appointment, call Maria Coronel at (858) 966-5819. Coordinator: Kristy Jones, RN, tscoe@lebonheur.org Clinic Frequency: First and fourth Monday and third Tuesday every month. Age Range Seen: Children and adults Director: Nagma Dalvi, MD Co-Director: Erika Axeen, MD (Pediatrics) Age Range Seen: Adults 18 years and older. Clinic Ambassadors:  Nilsa Roberts, nilsaa26@aol.com For clinic information contact Tia Dangerfield at Tia.Dangerfield@nemours.org  To schedule an appointment, call the scheduling secretary at (302) 651-5930. Young patients can suffer from tumors in the heart which may result in heart failure or conduction abnormalities. For Clinic Information and to schedule an appointment call (804) 828-9350. Learning that your child has tuberous sclerosis (TSC) can be overwhelming. Director: Mustafa Sahin, MD, PhD St. Paul  TSC Clinic at Neural Clinic Mexico The condition can cause tumors to grow in organs, including the brain, skin, heart, eyes, kidneys and lungs. Coordinator: Joyce Masterton, ANP Clinic Frequency: Monthly, pediatric multidisciplinary TSC program^ meets first Friday and the adult multidisciplinary TSC program meets first Tuesday AM. Adults with TSC please call (206) 320-3492 to schedule an appointment with Dr. Michael Doherty. Montreal, Quebec Age Range: Children 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. Co-Director: Monika Madan, MD Co-Director: Marvin Miller, MD For information about the clinic call Nancy Morris at (404) 785-3679. Age Range Seen: Children and Adults. The Tuberous Sclerosis Clinic provides a comprehensive diagnostic evaluation for TSC, including history, physical exam, laboratory testing, and radiographic studies. The support they need is the support you can give. Most of these tumors are considered benign, or noncancerous. Age Range Seen: Children will be seen by Dr. Porter at Lucille Packard Children’s Hospital. Little Rock Coordinator: Lisa Koneazny, RN, BSN Age Range Seen: Children and Adults Coordinated care so patients can access multiple services through one channel. Ohio residents may qualify for the H-Cap program, which is for low income and based on federal poverty guidelines. UCSF Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic Dedicated focus. Tuberous sclerosis complex (TSC) is a rare multisystem autosomal dominant genetic disease that causes non-cancerous tumours to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs and skin.A combination of symptoms may include seizures, intellectual disability, developmental delay, behavioral problems, skin abnormalities, lung disease, and kidney disease. Tel Hashomer The clinic also hosts educational programs for families and helps ensure all receive the best care possible. Clinic Frequency: Monthly, second Tuesday and third Thursday. To schedule an appointment please call Elizabeth Beers at (617) 355-2711. Clinic Frequency: Monthly, first Wednesday. Age Range: Children and Adults up to age 60 years. Affiliated with Texas Children’s Hospital, Baylor College of Medicine  To schedule an appointment please call (617) 726-0241. Stanford Co-Director: Saba Ahmad, MD Founding Director: David N. Franz, MD Director: Stacie Stapleton, MD Wilmington Through this program, we also advance our understanding and treatment of Tuberous Sclerosis through collaborative research while providing an educational avenue to families with Tuberous Sclerosis. Out-of-State Medicaid Policy: Some states are accepted; please contact the clinic for current policy. Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Clinic Frequency: Weekly on Wednesday. To schedule an appointment, call Gabriela Martinez at (786) 624-3552 or email at gabriela.martinez@nicklaushealth.org. For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org. Grand Rapids Director: Mary T. Silvia, MD Coordinator: Gada McMahen, RN, CPN Director: Akira Yoshii, MD, PhD Seattle TSC Clinic at Akron Children’s Hospital If you or your child with TSC needs an appointment at a clinic for the first time, you might be transferred to a call center to register for a medical record number (MRN) before you are able to schedule an appointment at the TSC clinic. Coordinator: Jennifer McCrave, RN, BSN, CNRN Co-Director: Dawn Siegel, MD Co-Director: Melissa Gregory, MD What is the cause of the spontaneous genetic mutation that produces TSC? To schedule an appointment call (312) 227-3540. Esta clínica cuenta con un doctor o un empleado que habla un poco de español (Dr. Co-Director: Carol Greene-Roethke, CRNP-APRN Houston Age Range Seen: New patients under age 18 years. The Tuberous Sclerosis Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. Co-Director: Katherine Taub, MD TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. University of Maryland Cleveland Coordinator: Maria Bonanni, MSN, CRNP and Megan Lawrence (administrative) Clinic Frequency: Weekly, every Wednesday all day. Every 4th Thursday afternoon. Children’s Hospital of Orange County TSC Clinic Director: David S. Wolf, MD, PhD Both children and adults can be seen in these clinics. The Clinic for Multidisciplinary Treatment of TS at Soroka University Medical Center Clinic Frequency: Weekly every Wednesday all year round The Hospital of the University of Pennsylvania (HUP) and Children’s Hospital of Philadelphia (CHOP) To help you choose the most appropriate TSC Clinic for your needs, please use the following screening tool: The TS Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Out-of-State Medicaid Policy: Requires one-time agreement with UCLA. A TSC Clinic Ambassador: To view full information about each TSC Clinic, please scroll down or click on the map below: All information listed in the map is also repeated below. The Tuberous Sclerosis Clinic at Children’s Hospital Colorado provides education, support and care for those with TSC and their families. Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital Director: Steven Sparagana, MD Coordinator: Natalie Williams, MS, MSN, APRN Birmingham Director: Debopam Samanta, MD Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Milwaukee Coordinators: Karen Agricola, CFNP; Gail McMonigle, RN; and Danielle Miller, RN We’re here to help. Clinic Frequency: Monthly, second and fourth Mondays. 4543. Clinic Ambassador: Tricia Bodner The University of Virginia (UVA) Tuberous Sclerosis Clinic What are the best medical or surgical approaches to treat brain, eye, and kidney disease? For further questions regarding these programs contact Financial Services at (513) 636-0201. Administrative Coordinator: To be named. Coordinator: Maria Lewek, RN, BSN Farmington For Clinic Information and to schedule an appointment call +52 8183483704. A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z | International. Director: Monica P. Islam, MD Co-Director: Deborah Rukin Gold, MD For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123. Orlando Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. For Appointments and Clinic Location: If you are a parent of a child 17 years or younger call (650) 723-0993. For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266. For more information about the clinic call (614) 722-4109 and to schedule an appointment call (614) 722-4610. Cook Children’s Clinic for Tuberous Sclerosis Complex Age Range Seen: Children and Adults. Multiple tubers appear as "cold" on Brain PET. To schedule an appointment call Dara Bell at (248) 551-7445. Clinic Frequency: Monthly This is the phone number for the pediatric neurology specialty clinic, which includes TSC. To schedule an appointment or for information on how to get a new patient referred to the TSC clinic please call (310) 206-4037 or email uclatsc@mednet.ucla.edu Texas Scottish Rite Hospital for Children Coordinator: Linn Thomson, LPN ^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. Duke Medical Center TAND Unit Director: Tanjala T. Gipson, MD Age Range Seen: Children and young adults up to age 21 years. Tuberous sclerosis is a neurological disorder that can cause growths (called tubers) and tumors to develop inside vital organs, including the brain, kidneys, lungs, heart and skin. Director: Cigdem I. Akman, MD Livingston Clinic Frequency: Weekly, half-day on Tuesday and half-day first Wednesday of each month. If they spread to involve a large enough area of the brain, partial seizures can turn into a generalized tonic-clonic seizure. Co-Director: Muhammad Zafar, MD Royal Oak Director: Ana Melikishvili, MD Is a volunteer, usually an adult with TSC or a parent of a child with TSC, who expresses interest in serving in this role and is a good fit with the clinic. To schedule an appointment with Dr. Liu call his coordinator, Crystal Ballard at (919) 660-3234. Co-Director: Maria Zak, MN, NP To schedule an appointment, call (718) 920-4378. Director: Tal Giboa, MD Age Range Seen: Children and young adults up to age 21 years old. 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. New York City TSC Clinic at Seattle Children’s Hospital Children’s Hospital of Pittsburgh TS Clinic Director: Darcy Krueger, MD, PhD A focused team approach from expert physicians who deliver comprehensive, multidisciplinary medical and surgical care. Clinic Frequency: Monthly on third Tuesday. Clinic Ambassador: Bridget Britt, bridget.walsh216@gmail.com Scheduling is flexible to meet patients’ needs whenever possible. For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927. Coordinator: Vanessa Léger, RN Tuberous Sclerosis Complex is a multi-system genetic condition and affected individuals require life-long care and surveillance for potential complications. These conditions may require specialized care. Director: Shelley Williams, MD Columbus Clinical Care, including having appropriate specialists and staff; Educational Resource, meaning the clinic serves as a hub for educating the public about TSC; and. Co-Director: Ana Aguilar-Bonilla, MD Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital  The Jack & Julia Tuberous Sclerosis Complex (TSC) Center offers personalized medical, developmental and psychological care to children as well as adults with this genetic disorder. Advent Health Medical Group Epilepsy at Orlando Coordinator: Valerie W. Chan, RN, BScN, CNN(C) Clinic Frequency: Monthly every third Thursday. Coordinator: Jan Paolini, RN, MSN, PNP Bronx Coordinator: Sonja Steinbrueck, RN Director: Josiane LaJoie, MD To schedule an appointment call +91-9324787559, +91-22-30666666. Clinic Frequency: One full Friday per month with additional clinics added as needed. Clinic Frequency: Monthly  (Schedule subject to change). 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 up to age 25 years. Age Range Seen: New patients up to age 21 years. The information you need. Miami   Coordinator: Nancy Morris, LPN To schedule an appointment, call the TSC Center at (212) 342-1036. To avoid confusion with scheduling please specify you or your child has TSC. Age Range Seen: Children up to age 21 years old. Atrium Healthcare TSC Clinic at Levine Children’s Hospital Clinic Frequency: First Tuesday of each month. 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