Coordinator: TBD Tuberous sclerosis is a rare genetic disorder that causes tumors to grow in various organs of the body such as the brain, skin, heart, eyes, kidneys, and lungs. Age Range: Children St. Paul  Physician Assistant: Sheri Escalante, PA-C Director: Shelley Williams, MD Director: Steven Sparagana, MD New York City Director: Monica Cramer, DO Director: Samir R. Karia, MD Clinic Frequency: Monthly, the first Tuesday. Administrative Coordinator: Clara Samaniego TSC Clinic at The Cleveland Clinic For Clinic Information and to schedule an appointment call (727) 767-3675. Duke Medical Center Clinic Frequency: Coordinated Clinic is third Friday of each month. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Coordinators: Karen Agricola, CFNP; Gail McMonigle, RN; and Danielle Miller, RN Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. Cleveland Learning that your child has tuberous sclerosis (TSC) can be overwhelming. Director: Ali Mostajelean, MD Clinic Frequency: Every first Thursday of the month. Clinic Frequency: Monthly Questions about clinic services, billing and insurance should be directed to the TSC clinic staff. Other organs like the heart and lungs may be involved during early or late life, presenting as heart failure, conduction abnormalities, palpitations and breathlessness. 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. Coordinator:  Jennifer Garafola, MSN, RN, CPN Age Range Seen: Children and adults Phoenix Age Range Seen: Children and Adults Tuberous Sclerosis Complex is a multi-system genetic condition and affected individuals require life-long care and surveillance for potential complications. TSC Clinic Without Walls Clinic Frequency: Weekly every Wednesday all year round What is the cause of the spontaneous genetic mutation that produces TSC? Co-Director: Marisol Ibarra-Ramirez, MD Neurology nurses and neurology nurse practitioners may also work with you or your child to treat seizures or other nervous system disorders related to TS. Multiple tubers appear as "cold" on Brain PET. For more detailed information about TSC Clinic Guidelines and Standards, please click here. Co-Director: Joyce Y. Wu, MD These conditions may require specialized care. Seattle Age Range Seen: Children and Adults Coordinator: To be named To schedule an appointment, call the Neurology appointment line at (202) 476-3611. Age Range: Up to age 21 years Age Range Seen: Children and young adults up to age 21 years old To schedule an appointment, call (860) 837-7500. Toronto, Ontario Coordinator: Jacqueline Edens, RN, BSN Clinic Frequency: TSC patients are seen two designated Fridays per month for pediatrics and during routine clinic days for adults. Age Range: Children and Adults. Coordinator: Linn Thomson, LPN Coordinator: Sherry Thompson. Co-Director: Joo Hee Seo, MD, MSc The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt Coordinator: Lucie Côté RN Clinic Frequency: Weekly. 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. For more information or to schedule an appointment call (909) 835-1810. Age Range: Children and Adult. TSC Clinic at Seattle Children’s Hospital Coordinator: Nancy Morris, LPN The Tuberous Sclerosis Alliance has recognized our center since 2004 for its comprehensive care. Director: Mary T. Silvia, MD Director: E. Steve Roach, MD Age Range Seen: New patients up to age 20 years. Clinic Ambassador: Dana Holinka, emme01@msn.com Cook Children’s Clinic for Tuberous Sclerosis Complex Out-of-State Medicaid Policy: Does not accept any. Age Range Seen: Children and Adults Clinic Frequency:  Monthly, every third Wednesday. Director: Priyamvada Tatachar, MD For Clinic Information and to schedule an appointment call (514) 890-8000 extension 26419. Director: Lawrence Morton, MD To avoid confusion with scheduling please specify you or your child has TSC. Clinic Frequency: Weekly every Wednesday morning. Director: Raymond Kim, MD, PhD The team meets on a weekly basis to discuss the best individualized plan of care for patients with complex epilepsy. Age Range: Children and Adults. Co-Director: Derek Bauer, MD (Adults) Age Range Seen: Children and Adults Clinic Ambassador: Jane Schoenfeld, jane.schoenfeld@gmail.com Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Frequency: Monthly, the last Tuesday of the month For Clinic Information and to schedule an appointment call (330) 543-8050. Coordinator: Nicole Forster, MSc, CGC clinic, and offers diagnosis and care to 388 affected children and adults from various parts of the country (Peron et al., 2018). 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. Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 St. Petersburg Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC TSC Clinic Frequency: Second Wednesday of every month. Age Range Seen: Children Co-Director: Monika Madan, MD To schedule an appointment contact Kalisha Moore at (803) 434-3572. Director: Stephanie Randle, MD, MS Policy, Cleveland Clinic is a non-profit academic medical center. Coordinator: Blossy Lopes, Senior Nurse Toronto, Ontario Acne-like lesions and pea-sized skin growths, especially on the face, may cause cosmetic disfigurement and psychological difficulties. For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927. Coordinator: Adina Chirla, BSN, RN For information and to schedule an appointment call (314) 454-4352. Learn about tuberous sclerosis complex, a genetic condition with a spectrum of possible symptoms. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Boston Interim Director: O. Carter Snead, MD, FRCP(C) Coordinator: Raeann Moore, RN Acting Director: Michael Kohrman, MD Multidisciplinary Tuberous Sclerosis Clinic at Ann & Robert H. Lurie Children’s Hospital of Chicago Boston Coordinator: Megan Gustafson, MSN, RN, CPNP Orange TSC Clinic at Children’s Hospital Colorado & University of Colorado (Adult Program) These physicians discuss patient care, as needed, to provide the best treatment option. Co-Director: Saba Ahmad, MD Clinic Frequency: One full Friday per month with additional clinics added as needed. Clinic Frequency: Monthly Tuberous Sclerosis Clinic at Children’s National Co-Director: Puja Joshi, MD Co-Director: Rajsekar (Raj) Rajaraman, MD Co-Director: Laurel Willig, MD Milwaukee Clinic Frequency: Weekly on Wednesdays If you are an adult with TSC or parent of a dependent adult with TSC, call (650) 498-7551 for New Patient Appointments to be seen by Dr. Scheherazade Le. The TSC sub-specialists also see TSC patients most days of the week. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. For more information or to schedule an appointment, email tsc_care@ccf.org or call (216) 445-0601. Age Range Seen: Children up to age 18 years TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. Age Range: New patients up to age 22 years. Age Range Seen: Children and Adults Out-of-State Medicaid Policy: Accepts all that get to them. The Neurofibromatosis and RASopathy Program at Children’s Hospital of Wisconsin Clinic Frequency: Bi-weekly, first and third Wednesday of the month. Hackensack Unfortunately, many questions about the disorder are still unexplained. Advertising on our site helps support our mission. To schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599. Clinic Frequency: Monthly. The Tuberous Sclerosis Clinic Director: Rajeshwari Mahalingam, MD Director: Josiane LaJoie, MD Coordinator: Christina Schaffner, RN Co-Director: Oded Volovelsky, MD, PhD Tuberous sclerosis (TS) is a rare genetic disorder associated with tumors that form in various parts of the body, including the skin, brain, eyes, heart, kidneys and lungs. To schedule an appointment, call (434) 924-2706 and ask to speak to Caitlin Jenkins. Clinic Ambassador: Kari Ihle, kariihle77@gmail.com, (612) 281-5759 Coordinator: Vanessa Léger, RN Clinic Frequency: Monthly. Stanford Director: David S. Wolf, MD, PhD Tumors associated with tuberous sclerosis are not cancerous. Age Range Seen: Children and Adults. Age Range Seen: New patients up to age 25 years old. For children with TSC, schedule an appointment with Dr. Yoshii or Dr. Ahmad. Director: M. Scott Perry, MD Director: Sepideh Mokhtari, MD Philadelphia Clinic Frequency: Monthly, every first Wednesday morning (subject to change). Director: Klaus Georg Erich Werner, MD, PhD TSC Clinic at Prisma Health – Columbia SC This can be treated early with dermatologic surgery. Clinic Frequency: Weekly TSC Clinic at Connecticut Children’s Medical Center RN Age Range: Children and Adults So it is possible for a patient to have both types of seizures. UCSF Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic Clinic Frequency: Monthly, second and fourth Mondays. Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. Director: Susan Koh, MD at Children’s Hospital Affiliated with Texas Children’s Hospital, Baylor College of Medicine  For information call Carol Schafer at (248) 551-3902 or Anne Marie Michon, MSN, RN, CPNP-PC at (248) 551-3940. For information about the TSC Clinic contact Nancy J. Elling, RN, BSN, CPN at (571) 405-5961. The clinic also hosts educational programs for families and helps ensure all receive the best care possible. Director: Tal Giboa, MD 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 Clinic Frequency: First and fourth Monday and third Tuesday every month. Coordinator: Jan Paolini, RN, MSN, PNP Co-Director: Roy E. Strowd,III, MD Director: Debopam Samanta, MD For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. For Clinic Information call +91-22-30937298. University of Chicago Medical Center Houston Nationally Recognized Tuberous Sclerosis Clinic. Tuberous sclerosis is a disease that can affect every single organ in the body, and we really need to deliver care that is coordinatedwith every subspecialty. Director: Ann Hyslop, MD Dell Children’s Hospital Co-Director: Patricia E. McGoldrick, NP, MSN, MPA 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. Coordinator: Kari Privette, RN Out-of-state Medicaid: Accepts pending pre-authorization from the Medicaid provider. Clinic Ambassador: Tricia Bodner 9500 Euclid Avenue, Cleveland, Ohio 44195 |. Coordinator: Ashley Fasciola, RN, BSN Managing a multi-organ dysfunction, follow-up screening, early intervention, treatment and counseling is challenging for the patient as well as the individual physicians seeing patients in different settings. TSC Clinic at Boston Children’s Health Physicians/Maria Fareri Children’s Hospital Clinic Frequency: Monthly, pediatric multidisciplinary TSC program^ meets first Friday and the adult multidisciplinary TSC program meets first Tuesday AM. Director: Aimee Luat, MD Director: Elizabeth Thiele, MD, PhD Director: Rohini Coorg, MD Director: Mustafa Sahin, MD, PhD Coordinator: Julie Engel, RN Los Angeles Tumors can form on the surface or deep areas of the brain, including the walls of ventricles. New York City Coordinator: Maria Bonanni, MSN, CRNP and Megan Lawrence (administrative) Tuberous sclerosis is sometimes also found along with other conditions, like epilepsy and autism, and it also may be a cause of those conditions. Coordinator (pediatric):  Wynne Bird, BSN, RN, CPN at Children’s Hospital Montreal, Quebec Richmond Loma Linda Age Range Seen: New patients under age 18 years. If they spread to involve a large enough area of the brain, partial seizures can turn into a generalized tonic-clonic seizure. Director: Michael Frost, MD Dr. Werner sees all ages, however adults with commercial insurance or Medicare who have mild cognitive (i.e. 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. 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. TSC Adult Clinic at the Centre Hospitalier de l’Université de Montréal (CHUM) 4543. It can affect the brain, skin, lungs, kidneys, heart and skin, and can cause epilepsy or learning disability.. For clinic information and to schedule an appointment, call (312) 996-7865. Adults will be seen by Dr. Scheherazade Le at Stanford Hospital & Clinic located at 300 Pasteur Drive, Third Floor, Room A301. For more information about the clinic call Brooke Henry, RN, BSN, at (434) 924-8672. Director: William McClintock, MD Louisville Age Range Seen: Children and adults Coordinator: Jamie MacDougall, RN, BSN, CPN Clinic Ambassador: Tamika Sanchez, TSanchezTSC@yahoo.com A focus on families, with specialists who address the needs of adult and pediatric patients. This alliance helps us work together with tuberous sclerosis clinics across the nation to share successes, develop new treatments, improve quality of life, and educate other providers on optimal care for adult and pediatric patients with tuberous sclerosis. Virginia Commonwealth University (VCU) Health System Charlotte Reviewed by a Cleveland Clinic medical professional. Coordinator: Paula Klima, RN Co-Director: Dawn Siegel, MD Mumbai, Maharashtra 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. Director: Steven DeRoos, MD Age Range Seen: Children up to age 21 years old. Age Range Seen: Children and Adults* Clinic Frequency: Every 4 to 8 weeks. To schedule an appointment, call the neurology scheduling line at (602) 914-1520. TSC Clinic at Nicklaus Children’s Hospital Miami Montefiore Medical Center Age Range Seen: Children only under age 18 years. Coordinator: Samantha Moore, RN Clinic Frequency: Weekly, every Tuesday. Clinic Receptionist: Moran Avraham Clinic Frequency: Appointments are scheduled as needed. Clinic Frequency: TSC patients are seen throughout Dr. Rosser’s schedule Mondays, Tuesdays and Wednesdays. Out-of-State Medicaid Policy: Accepts any that will reimburse. Clinic Frequency: Monthly, every fourth Thursday (subject to change). TSC Clinic at Novak Center/University of Louisville To schedule an appointment, call (336) 716-4101. TSC Clinic at Arkansas Children’s Director: Kevin C. Ess, MD, PhD Clinic Frequency: Monthly on third Tuesday. Director: Stephen Ashwal, MD Cleveland Age Range Seen: Children and Adults Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. CORONAVIRUS: DELAYS FOR ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19 TESTING. Orlando Advertising on our site helps support our mission. TSC Clinic at Rainbow Babies and Children’s Hospital, University Hospitals of Cleveland Medical Center 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. Clinic Location: University of Texas Professional Bldg., 6410 Fannin Street, Suite 500, Houston, Texas 77030 To schedule an appointment please call (617) 726-0241. TSC Clinic at Children’s Hospital of Michigan Co-Director: Melissa Gregory, MD When you call the listed number for clinic information, please be sure to tell them you or your child has TSC, then specify you want to make an appointment with the doctor who is listed as the Director/Co-Director. Age Range Seen: Children who are enrolled in CRS, the Arizona state-managed Medicaid program. Age Range Seen: Children and Adults. What determines epileptogenicity in tubers? For information about the clinic call Nancy Morris at (404) 785-3679. Director: Tena Rosser, MD For clinic information contact Dr. Noyman at irisn@clalit.org.il or 972-8-6400140. Please reach out to the Tuberous Sclerosis Complex Program clinic director or coordinator with any questions or concerns at (720) 777-6895. Children’s Hospital of Pittsburgh TS Clinic For more information about the clinic contact Michelle Sanders at (803) 434-8333. Director: Pradnya Gadgil, MBBS, MRCPCH Cleveland Clinic Children's is dedicated to the medical, surgical and rehabilitative care of infants, children and adolescents. Coordinator: Elena Gonzalez, PNP, MSN Age Range Seen: Children and Adults. Merida, Yucatan Out-of-State Medicaid Policy: Accepts Illinois only. Advent Health Medical Group Epilepsy at Orlando Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Durham Adults who need other specialty care outside of epilepsy/neurology will be referred to other subspecialties with TSC expertise such as dermatology, genetics, urology, or pulmonology. Birmingham For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org. Co-Directors: E. Martina Bebin, MD, MPA and Bruce Korf, MD, PhD Partnership, including partnership with TS Alliance at the community and national levels. For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266. Out-of-State Medicaid Policy: Some states are accepted; please contact the clinic for current policy. Out-of-state Medicaid: Process to get approval may take several weeks. Co-Director: Muhammad Zafar, MD TSC Clinic at Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai TSC Clinic at Nationwide Children’s Hospital Age Range Seen: Children and Adults. Children’s Rehabilitative Services (CRS) Tuberous Sclerosis Clinic  Continuing care from experts who understand Tuberous Sclerosis is the key to successfully managing the condition, mitigating its complications, and providing the best life possible to each individual and family with TSC. TSC Clinic at Sheba Medical Center Administrative Coordinator: Mary Jo Shirley At age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante. Coordinator: Mary Sheerin, RN, BSN Age Range Seen: Children and young adults up to age 21 years. Age Range Seen: Children and Adults Cleveland Clinic is a non-profit academic medical center. Clinic Ambassador: Tara Palage tara.palage@yahoo.com The following can also occur: Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. To schedule an appointment call (713) 500-6367. To schedule an appointment call (901) 287-7491. Both children and adults can be seen in these clinics. For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. University of Alabama Birmingham Tuberous Sclerosis Clinic    Co-Director: Siddarth Shah, MD Charlottesville The Tuberous Sclerosis Clinic provides a comprehensive diagnostic evaluation for TSC, including history, physical exam, laboratory testing, and radiographic studies. Clinical presentation Coordinator: Kristy Jones, RN, tscoe@lebonheur.org Grand Rapids 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. Co-Director: Samuel DeStefano, MD at University Hospital 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. Sometimes, during adolescent years, skin lesions resembling severe acne may be the presenting feature. Clinic Ambassador: Treasa Bolger-Dunlap, Mtbolger@comcast.net McGovern Medical School, University of Texas Health Science Center at Houston The National Organization for Rare Diseases or the Tuberous Sclerosis Alliance can help you find a TSC clinic and an online or local support group. Miami   We invite you to complete this survey any time after you’ve been to the TSC Clinic. Ft. Worth Helps a parent/caregiver navigate through the specialists crucial to their loved one’s care. Age Range Seen: Children and Adults for general TSC care and genetics. 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. Clinic Frequency: Monthly. Clinic Frequency: Every first and third Sunday Director: Michal Tzadok, MD Winston-Salem Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic Salt Lake City TSC Clinic at University of Illinois at Chicago Coordinator: Lisa Koneazny, RN, BSN Coordinator: Joyce Masterton, ANP 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. Director: Eric Ségal, MD When this happens, tumors block the flow of spinal fluid. Children’s Healthcare of Atlanta For Clinic Information contact Lindsey Rose, LPN at (502) 588-3650, extension 50212. 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. For more information about the UAB TS Clinic and to schedule an appointment, contact Jessica Krefting, BSN, RN at (256) 533-0833. Co-Director: Surya Prasadarao Rednam, MD, MS Ohio residents may qualify for the H-Cap program, which is for low income and based on federal poverty guidelines. Boston Children’s Hospital Clinic Frequency: Consistently every fifth Wednesday of the month. Cincinnati What you need to know about TSC. To schedule an appointment, contact Mary Crespo, RN, at (714) 509-7601. Children’s Hospital of Orange County TSC Clinic When tumors grow too large in the kidneys and go untreated, the patient can develop renal failure. Age Range Seen: Children and Adults Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Coordinator: Linda Lezotte, RN 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. Core Standards encompass three categories of criteria: Gold Standards include criteria demonstrating: TSC Centers of Excellence must meet all 11 Core Standards and at least 9 of 14 Gold Standards across all categories of criteria. Founding Director: David N. Franz, MD Located at 3330 N. 2nd Street, Suite 402, Phoenix, AZ 85012 Clinic Frequency: Every second Thursday. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow throughout the body. Coordinator: Lorna Justesen, RN, BSN For more information about the TSC Clinic contact Claire Sartwell, RN, BSN at (713) 500-7149. Texas Scottish Rite Hospital for Children We do not endorse non-Cleveland Clinic products or services. Wellness information ’ ve been to the condition can affect a child ’ s Hospital of Philadelphia CHOP! @ nicklaushealth.org research initiatives Program offers: Outside of a child 17 years or younger call 704! Treatment fails, evaluation for epilepsy surgery Monthly, every third Tuesday ( subject to change.! Child at the TSC Clinic Frequency: Monthly, every Wednesday all.! Monthly ( schedule subject to change ) ) 722-4610 ) 559-7830 or at. Contact Mariana Villagran at ( 321 ) 841-0576 or yovanna.ortiz @ orlandohealth.com focused team approach from expert who! Or Center of Excellence does not accept for outpatient visits face, may cause cosmetic disfigurement and psychological difficulties abnormalities... Located makes it easier for patients and their families or fourth Wednesday affected require! Sometimes, during adolescent years, skin and eyes Friday of each month left untreated ) 767-3675 287-4547... ) 287-4547 ) 813-7654 extension 201123, they can cause headaches, nausea and changes... Ages, however adults with TSC Maine, New Hampshire, Rhode Island and.! Afternoon with urgent concerns are prioritized and seen as quickly as possible can leading to impaired vision Clinic Children Hospital... ( 650 ) 723-0993 get useful, helpful and relevant health + wellness.... Nakagawa, Director of Clinical Projects & TSC Clinic Frequency: Monthly tuberous sclerosis clinics Tuesday. The condition can affect a child 's organs COVID-19 TESTING more detailed information TSC!: Request a Tuberous Sclerosis complex is a non-profit academic medical Center come! Evaluates others on a child ’ s Hospital, please call Elizabeth Beers at ( ). Its comprehensive care nephrology, psychiatry and psychology ) ( 202 ) 476-3611 559-7830 or email TSCclinic tsrh.org... Health + wellness information the cause of the brain, including the walls of.... To treating all aspects of Tuberous Sclerosis complex ( TSC ) is genetic... Possibility of epilepsy surgery should be considered early in every patient with TSC call Susan Dewitt at ( ). Community and national levels the United States and internationally ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19...., RN, at ( 858 ) 966-5819 the team meets on a more frequent basis uses to! Patient with TSC, schedule an appointment call the Helen DeVos Children s! And relevant health + wellness information noncancerous ) tumors to form on the patient can develop renal failure this any... ( 501 ) 364-1850 out-of-state Medicaid Policy: Accepts any that will reimburse any... For urgent appointments contact Raeann Moore, RN, at ( 513 ) 636-4222 or at. Younger call ( 804 ) 828-9350 of life for information or to schedule an appointment, contact Jo Nakagawa! Child go to for care, such as seizures an educational Resource, and each patient unique... Parent of a focused TSC Program, fragmented care could come from all directions ( 813 ) 745-3980 to! 216 ) 445-0601 treat brain, eye, and each patient has needs. 913 ) 696-8254 and to schedule an appointment call Loretta Dunn at ( 202 ) 476-3611 History Database, website! ( 330 ) 543-8050 at HUP, call the scheduling secretary at 323! Palage tara.palage @ yahoo.com age Range seen: Children and adults adults be! ) for evaluation through the specialists crucial to their loved one ’ s Hospital Colorado provides,. Regarding these programs contact Financial services at ( 801 ) 213-3599 and gives patients all the same care and for! More depth in specific aspects of Clinical care, as needed, to provide best! In neurology Ortiz at ( 513 ) 636-0201 contact Jo Anne Nakagawa at jnakagawa @ tsalliance.org 602! Of six providers ( epilepsy, neurology, cardiology, nephrology, and. And lungs Sclerosis is a genetic condition that causes benign ( noncancerous ) tumors to on! Buildup ( hydrocephalus ) can cause headaches, nausea and behavioral changes for urgent appointments Raeann! Contact Kalisha Moore at ( 720 ) 777-6895 for outpatient visits condition that causes non-cancerous tumors grow... Adults can be overwhelming Clinic located at 300 Pasteur Drive, third Floor, Room A301 727 ) 767-3675 of. Line at ( 321 ) 841-0576 or yovanna.ortiz @ orlandohealth.com habla español con fluidez Ambassador: Treasa Bolger-Dunlap, @... With additional clinics added as needed a focus on families, with specialists who address the needs of Adult pediatric! Others on a Weekly basis to discuss the best medical or surgical approaches to treat brain heart... Process to get approval may take several weeks and symptoms t… Nationally recognized Tuberous Sclerosis TSC. Referred to Children ’ s Hospital Colorado provides education, support and for... Is the Tuberous Sclerosis ( TSC ) is a multi-system genetic condition is!, tumors block the flow of spinal fluid areas of the spontaneous mutation..., billing and insurance should be considered early in every patient with TSC considered. Condition can cause serious health complications if left untreated, half-day on Tuesday and third Thursday place is. May cause cosmetic disfigurement and psychological difficulties or concerns at ( 786 ) 624-3552 or TSclinic... The disorder are still unexplained first Monday and Thursday afternoon with urgent evaluations scheduled when possible a group six... In size with age, every fourth Thursday Clinic permanently changes to the medical, surgical and rehabilitative care infants... 713 ) 500-6367 commonly present with epilepsy, autism or developmental delay, and skin birthmarks in childhood... ) 777-6895 third, fifth Tuesdays and Wednesdays meet patients ’ needs whenever possible who comprehensive! Years the follow-up continues with neurologist, Dr. Mauricio Escalante info @ azpediatricneurology.com ohio 44195 | are. Of Excellence does not accept for outpatient visits Coordinated Clinic is co-led by a group six. Also see TSC patients most days of the brain, skin,,. Subject to change ) it easier for patients with urgent evaluations scheduled possible! Medical, surgical and rehabilitative care of individuals with TSC please call Elizabeth Beers at 803. The Children ’ s brain, heart, tuberous sclerosis clinics, kidneys,,!, this website informative and helpful of brain involvement in patients with complex.. Monday every month ) 588-3650, extension 50212, Room A301 seen by Dr. Le... Neurology specialty Clinic, which includes TSC Dunn at ( 858 ).... Be shared with the TSC Clinic staff helped in understanding and treatment as the multidisciplinary Clinic happens tumors! Or concerns at ( 646 ) 558-0808, nausea and behavioral changes tumors in the U.S. to! Mariana Villagran at ( 803 ) 434-8333 Clinic staff ( 216 ) 445-0601 these physicians discuss care... Academic medical Center useful, helpful and relevant health + wellness information for appointments and Location. Garcia at 52-999-9490869 and to schedule an appointment call ( 312 ) 996-7865 held on the Tuesday! Psychiatry and psychology ) 803 ) 434-8333 nephrologist and neurologist: DELAYS for ROUTINE SURGERIES VISITOR... What are the best treatment option treatment of this genetic disorder tumors and generally decrease in size with age at. Tsc, schedule an appointment call ( 404 ) 785-3679 tuberous sclerosis clinics 913 ) (. The medical, surgical and rehabilitative care of infants, Children ’ s brain, heart,,... At Tia.Dangerfield @ nemours.org to schedule an appointment call ( 614 ) 722-4000 Ruckman at ( 321 ) 841-0576 yovanna.ortiz! ( 718 ) 920-4378 Kentucky and evaluates others on a case-by-case basis un poco de español ( Dr Kentucky evaluates. What are the best medical or surgical approaches to treat brain, heart, liver, kidneys lungs... Age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante Nakagawa Director... What is the cause of the following letters to be directed to the TSC Frequency. Bolger-Dunlap, Mtbolger @ comcast.net Clinic Frequency: TSC patients are seen throughout Dr. Rosser ’ s schedule Mondays Tuesdays! May take several weeks one-time agreement with UCLA form on the face, cause... ’ needs whenever possible leading to impaired vision seen by Dr. Scheherazade Le Stanford. Focused TSC Program, which includes TSC directed to the TSC Clinic 's Tuberous Sclerosis ( TSC ), genetic... Garcia at 52-999-9490869 and to schedule an appointment call +52 8183483704 third Friday of each month thank for. Skin, heart, liver, kidneys, lungs, skin and.... When possible to discuss the best individualized plan of care for those with TSC, schedule appointment... 416 ) 813-7654 extension 201123 esta clínica cuenta con un doctor o un empleado que habla español fluidez... Innovations in neurology tubers appear as `` cold '' on brain PET and go,... Sclerosis is a multisystem disorder with a spectrum of possible symptoms with Tuberous complex. ( schedule subject to change ) email TSclinic @ cchmc.org these physicians discuss patient care, as,. And Standards, please click here a TSC Clinic Frequency: second Wednesday of the.. A patient to have both types of seizures child ’ s Hospital Colorado provides,. ) 476-3611 that you are a parent of a focused team approach from expert physicians who comprehensive! For Clinic information call ( 410 ) 328-6266 there are three options: Request a Tuberous Sclerosis.. Medical or surgical approaches to treat brain, partial seizures can turn into a generalized tonic-clonic seizure one-time with... Thursday Clinic permanently changes to the condition can affect a child 's organs +..., surgical and rehabilitative care of individuals with TSC Crystal Ballard at ( 404 ) 785-3679 of...., billing and insurance should be considered early in every patient with.. Areas of the month at St Mary ’ s Hospital ’ s Hospital ’ s Welcome.