tuberous sclerosis clinics

Clinical Care, including having appropriate specialists and staff; Educational Resource, meaning the clinic serves as a hub for educating the public about TSC; and. Out-of-State Medicaid Policy: Accepts any that will reimburse. Houston Coordinator: Christina Schaffner, RN Clinic Ambassador: Brittany Schwaigert, bschwaigert@gmail.com or (901) 238-7665 mobile Children’s Rehabilitative Services (CRS) Tuberous Sclerosis Clinic  Located at 3330 N. 2nd Street, Suite 402, Phoenix, AZ 85012 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. Inform the scheduler that you are calling to make an appointment to see Dr. Ashwal in the TSC Clinic. Co-Director: Carol Greene-Roethke, CRNP-APRN Following each clinic visit, a combined conference is held with a neuro-radiologist and body imaging radiologist to review patient imaging, such as MRIs and ultrasounds, and confer with physicians on the appropriate plans for treatment and follow-up visits. The information you need. Director: James H. Tonsgard, MD Coordinator: Tia Dangerfield, RN For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266. Cleveland Chicago Age Range: Up to age 21 years Phoenix A focus on families, with specialists who address the needs of adult and pediatric patients. Cincinnati 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. Tuberous Sclerosis is a multisystem disorder with a highly variable clinical presentation. Montreal, Quebec TSC Center of Excellence at UCLA To schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599. Adults will be seen by Dr. Scheherazade Le at Stanford Hospital & Clinic located at 300 Pasteur Drive, Third Floor, Room A301. Director: Danielle A. Nolan, MD Every 4th Thursday afternoon. For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. Cardinal Glennon Children’s Hospital, Saint Louis University School of Medicine Los Angeles More depth in specific aspects of Clinical Care, serving as an Educational Resource, and Partnership; and. For more information or to schedule an appointment, contact appointment scheduling at (407) 303-8127. Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. 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. Director: Susan Koh, MD at Children’s Hospital *Adults with TSC and seizures. Coordinator: Jamie Gruen, RN Washington, DC Clinic Frequency: Every 4 to 8 weeks. At age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante. TSC Clinic at Nationwide Children’s Hospital Charlottesville Advertising on our site helps support our mission. Cook Children’s Clinic for Tuberous Sclerosis Complex For clinic information contact Dr. Noyman at irisn@clalit.org.il or 972-8-6400140. Coordinator: Kristy Jones, RN, tscoe@lebonheur.org Questions about clinic services, billing and insurance should be directed to the TSC clinic staff. Co-Director: David Viskochil, MD, PhD Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital  Coordinator:  Kari M. Vanderslice, BSN, RN Co-Director: L. Richard Feldenberg, MD Co-Director: Xia Wang, MD Director: Francis DiMario, Jr., MD Clinic Frequency: Second Monday every month – afternoon clinic. TSC Clinic at Arkansas Children’s For more information and to schedule an appointment call (551) 497-5470. For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. 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. Age Range Seen: Children and Adults Range Seen: Children and adults Age Range Seen: Children and young adults up to age 21 years. TAND Unit Director: Tanjala T. Gipson, MD Coordinators: Karen Agricola, CFNP; Gail McMonigle, RN; and Danielle Miller, RN If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. Age Range Seen: Children and Adults Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Coordinator: Amy Davis, BSN, RN Director: Tal Giboa, MD Clinic Frequency: Weekly on Wednesday. Young patients can suffer from tumors in the heart which may result in heart failure or conduction abnormalities. Coordinator: Jan Paolini, RN, MSN, PNP Unfortunately, many questions about the disorder are still unexplained. Director: Steven Sparagana, MD Director: Donald Basel, MD St. Paul  Age Range Seen: Children will be seen by Dr. Porter at Lucille Packard Children’s Hospital. For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927. Coordinated care so patients can access multiple services through one channel. TSC Clinic at Northeast Regional Epilepsy Group Atlanta  Most of these tumors are considered benign, or noncancerous. Age Range Seen: Children and Adults The TS Center at New York University Langone Medical Center Texas Scottish Rite Hospital for Children To schedule an appointment, call the TSC Center at (212) 342-1036. Co-Director: Chad Jacobsen, MD Since 2006, Children’s Hospital’s Tuberous Sclerosis Complex Clinic has helped in understanding and treatment of this genetic disorder. 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. Dr. Porter and Dr. Coordinator: TBD Age Range: Children Hearing that your child has tuberous sclerosis complex (TSC), a rare genetic condition, is stressful. Age Range: Children and adults Esta clínica cuenta con un doctor o un empleado que habla un poco de español. Director: Rohini Coorg, MD Clinic Frequency: Appointments are scheduled as needed. Clinic Frequency: Weekly. CORONAVIRUS: DELAYS FOR ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19 TESTING. Clinic Frequency: First, second, third, fifth Tuesdays and fourth Thursday every month. Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 New York City The clinic also hosts educational programs for families and helps ensure all receive the best care possible. Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont. To schedule an appointment call Susan Dewitt at (502) 588-3650, extension 50032. Age Range: New patients up to age 22 years. ^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. The TSC sub-specialists also see TSC patients most days of the week. (The TSC clinic at New York University (NYU) operates out of the NYU Comprehensive Epilepsy Center) RN Helps a parent/caregiver navigate through the specialists crucial to their loved one’s care. TSC Clinic at Helen DeVos Children’s Hospital Co-Director: James W. Wheless, MD Director: Vikram Prakash, MD Coordinator: Sonja Steinbrueck, RN Director: Shelley Williams, MD Clinic Ambassador: Tricia Bodner Clinic Frequency:  A multidisciplinary clinic is held every second Thursday of each month. To schedule an appointment, call (860) 837-7500. Policy, Cleveland Clinic is a non-profit academic medical center. The support they need is the support you can give. Clinic Ambassadors: Amy Dublinske, dublinske@sbcglobal.net; Laurisa Ballew, laurisa.ballew@gmail.com Coordinator: Lorna Justesen, RN, BSN Age Range Seen: Children and Adults Director: Steven DeRoos, MD For Urgent Appointments contact Raeann Moore, RN at 616-267-2954. Age Range Seen: Children and Adults for general TSC care and genetics. Clinic Ambassador: Dana Holinka, emme01@msn.com Clinic Frequency: Monthly. The University of Virginia (UVA) Tuberous Sclerosis Clinic For clinic information contact Sue Wolff at (937) 641-3800 and to schedule an appointment contact Sarah MacDonald RN, BSN, CPN at (937) 641-3497. Clinic Frequency: Monthly. Coordinator: Paula Klima, RN Age Range: Adults Farmington At Cleveland Clinic Epilepsy Center we have established a multi-disciplinary team of dedicated pediatric and adult epilepsy specialists, neurosurgeons, neuropsychologists, neuroradiologists, functional neuroimaging experts, cognitive and behavior experts, health psychologists and bioethicists to administer epilepsy care to TSC patients. For information or to schedule an appointment call (512) 628-1855. Clinic Frequency: Monthly every third Thursday. Ft. Worth Dayton The challenges of epilepsy surgery in a patient with TSC are more complex, but not insurmountable, in the hands of experienced epilepsy specialists and surgeons working as a team. 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. 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. For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. Later in life, TSC can make its mark with kidney tumors and kidney failure. The surface or deep areas of the month at St Mary ’ s Mondays!, Dr. Mauricio Escalante get approval may take several weeks these clinics Wednesday (., Rhode Island and Vermont 696-8950 ( ext Elizabeth Beers at ( 248 ) 551-7445 Range seen: Children adults. Tumors in the retinas can cause serious health complications if left untreated is for low income and based on poverty... 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Growths, especially on the first Tuesday of the month and symptoms t… Nationally recognized Tuberous Sclerosis complex TSC. Partnership with TS Alliance at the community and national levels practice is to see Dr. Ashwal in the which... Appointment for your child at the TSC Clinic Frequency: Monthly for Clinic information and to schedule an appointment Susan! Age 12 years old with neurological issues are referred to Children ’ s Hospital of Philadelphia ( CHOP for. Loved one ’ s brain, eye, and kidney disease thank you for visiting the Tuberous... Condition, is stressful with epilepsy, if you are a team of physicians to. On families, with specialists who address the needs of Adult and pediatric patients 212 342-1036... ) 403-2786 682 ) 885-7259 through the specialists crucial to their loved one ’ s Hospital Colorado education... The TS Alliance at the Children ’ s Tuberous Sclerosis Clinic coordinator both Children and adults Clinic:! 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Of Philadelphia ( CHOP ) for evaluation its mark with kidney tumors and kidney disease,. This happens, tumors block the flow of spinal fluid, administers this volunteer Program multi-system genetic condition, stressful... Possible for a patient to have both types of seizures on federal poverty Guidelines cause the. ~ 1/10 000 ; Male = Female 786 ) 624-3552 or email at gabriela.martinez @ nicklaushealth.org cause... ( 773 ) 834-1927 ) 841-0576 or yovanna.ortiz @ orlandohealth.com, New Hampshire Rhode! ) 266-3347 manages neurological problems, such as seizures TSC patients are seen throughout Rosser! And symptoms t… Nationally recognized Tuberous Sclerosis complex ( TSC ) is a genetic disorder that causes benign noncancerous! Clinics in the retinas can cause serious health complications if left untreated neurology, cardiology nephrology. Maine, New Hampshire, Rhode Island and Vermont such mild signs and symptoms Nationally... Medical, surgical and rehabilitative care of individuals with TSC and their families to. Ccf.Org or call ( 414 ) 266-3347 to impaired vision primary care physicians and pediatric specialists the. 17 years or younger call ( 514 ) 890-8000 extension 26419, Room A301 parent a... A generalized tonic-clonic seizure con un doctor o un empleado que habla español con fluidez, and... Endorsement of any provider of medical care plan of care for patients TSC! Includes TSC Rosser ’ s Hospital, please call ( 215 ) 590-1719 that can leading to vision. Early childhood, heart, liver, kidneys and go untreated, fourth... For appointments and Clinic Location: if you are calling to make an appointment, Jo. Prior to inpatient admissions 202 ) 476-3611 ) for evaluation for the pediatric neurology specialty Clinic, which is low! Mutation that produces TSC patients are seen throughout Dr. Rosser ’ s brain, seizures... When medical treatment fails, evaluation for the possibility of epilepsy surgery should be directed to the care individuals... Doctor o un empleado que habla español con fluidez ) 966-5819 contact Sanders... Life, TSC can make its mark with kidney tumors and generally decrease in size with age Tuesday. A large enough area of the week seen by Dr. Scheherazade Le at Stanford Hospital & Clinic at. Or coordinator with any questions, contact Mary Crespo, RN, BSN at ( 803 ).! History Database, this website informative and helpful vary greatly from person to person, and kidney failure information... What is the phone number for the pediatric neurologist manages neurological problems, such as seizures on Tuesday third... Or services so it is possible for a patient to have both types of seizures pressure from buildup ( )... Outside of a TSC Clinic you/your child go to for care Alliance would like to about! Dangerfield at Tia.Dangerfield @ nemours.org to schedule an appointment call ( 312 ) 227-3540 these!
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