tuberous sclerosis clinics

Clinic Frequency: Daily Age Range Seen: Children and Adults* Monterrey, Nuevo León Director: Darcy Krueger, MD, PhD Clinic Frequency: One half-day every second Monday of the month. Director: E. Steve Roach, MD Children’s Healthcare of Atlanta 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. Kansas City For more information about the clinic call (614) 722-4109 and to schedule an appointment call (614) 722-4610. 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. For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. Director: Monica P. Islam, MD Signs and symptoms vary widely, depending on where the growths develop and how severely a person is affected.Tuberous sclerosis is often detected during infancy or childhood. The Tuberous Sclerosis Clinic is one of about 25 clinics in the United States dedicated specifically to the care of individuals affected by tuberous sclerosis complex (TSC) and their families. Coordinator: Jamie MacDougall, RN, BSN, CPN Clinic Frequency: Monthly, second and fourth Mondays. Coordinator: Rebekah Dailidonis, APRN Clinic Frequency: Daily. The Hospital of the University of Pennsylvania (HUP) and Children’s Hospital of Philadelphia (CHOP) Range Seen: Children and adults Co-Director: Siddarth Shah, MD A focused team approach from expert physicians who deliver comprehensive, multidisciplinary medical and surgical care. Clinic Frequency: Monthly. We do not endorse non-Cleveland Clinic products or services. Co-Directors: E. Martina Bebin, MD, MPA and Bruce Korf, MD, PhD Nashville Charlottesville Loma Linda Clinic Frequency: Daily 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. Clinic Frequency: Monthly. For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. Coordinator: Jennifer McCrave, RN, BSN, CNRN Clinic Frequency: Monthly The following can also occur: Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. Coordinated care so patients can access multiple services through one channel. Director: Stephen Ashwal, MD Administrative Coordinator: Carmen Williams Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital  For Clinic Information call Dr. Garcia at 52-999-9490869 and to schedule an appointment, contact Alma Martinez at 52-999-9260207 or receocionneural@gmail.com. Director: Michael Frost, MD Children’s Rehabilitative Services (CRS) Tuberous Sclerosis Clinic  Durham For Clinic Information call (813) 745-3980 and to schedule an appointment call (813) 745-4251. Age Range: Children Our clinic is designated and affiliated with the Tuberous Sclerosis Alliance. Age Range: Children and Adults TSC Clinic at The Cleveland Clinic Coordinator: Jacqueline Edens, RN, BSN Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. University of Alabama Birmingham Tuberous Sclerosis Clinic    Multiple tubers appear as "cold" on Brain PET. It is commonly present with epilepsy, autism or developmental delay, and skin birthmarks in early childhood. Age Range Seen: Children and young adults up to age 21 years old That is absolutely critical. Acne-like lesions and pea-sized skin growths, especially on the face, may cause cosmetic disfigurement and psychological difficulties. Partnership, including partnership with TS Alliance at the community and national levels. To schedule an appointment, call (914) 768-3970. For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org. Out-of-state Medicaid: Accepts pending pre-authorization from the Medicaid provider. For clinic information and to schedule an appointment, call (312) 996-7865. 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. Co-Director: Roy E. Strowd,III, MD Director: Stephanie Randle, MD, MS Age Range Seen: Children and adults Director: Francis M. Filloux, MD Coordinator: Sonja Steinbrueck, RN Coordinator: Melissa Calzada, MD Director: M. Scott Perry, MD Coordinator: Michelle Vergara, RN Clinic Ambassador: Tamika Sanchez, TSanchezTSC@yahoo.com For clinic information and to schedule an appointment, please call (973) 322-7042. Toronto, Ontario For more information or to schedule an appointment, contact appointment scheduling at (407) 303-8127. Clinic Frequency: One full Friday per month with additional clinics added as needed. Tuberous Sclerosis Complex is a multi-system genetic condition and affected individuals require life-long care and surveillance for potential complications. Dr. Porter and Dr. Adults–Monthly, every third Thursday. Clinic Ambassador: Treasa Bolger-Dunlap, Mtbolger@comcast.net Director: Vinodh Narayanan, MD Montreal, Quebec Director: Mohammed Ilyas, MD Age Range:  Children and Adults Coordinator:  Nancy Elling, RN, BSN, CPN Co-Director: Donald Phillips, MD, MPH Coordinator: Linda Lezotte, RN Tumors can form on the surface or deep areas of the brain, including the walls of ventricles. Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic Director: Aimee Luat, MD UCSF Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic Out-of-State Medicaid Policy: No restrictions. Clinic Frequency: Monthly, first Wednesday. Clinical Care, including having appropriate specialists and staff; Educational Resource, meaning the clinic serves as a hub for educating the public about TSC; and. If they spread to involve a large enough area of the brain, partial seizures can turn into a generalized tonic-clonic seizure. TSC Clinic Without Walls To schedule an appointment call Dara Bell at (248) 551-7445. Advertising on our site helps support our mission. Seattle Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Coordinator:  None Epidemiology. Clinic Frequency: Monthly, every second Thursday. Out-of-State Medicaid Policy: Some states are accepted; please contact the clinic for current policy. Coordinator: Linn Thomson, LPN The Tuberous Sclerosis Clinic at St. Louis Children's Hospital is one of about 25 Tuberous Sclerosis Complex (TSC) clinics in the U.S. dedicated specifically to the care of individuals with TSC. 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. Co-Director: Patricia E. McGoldrick, NP, MSN, MPA What are the best medical or surgical approaches to treat brain, eye, and kidney disease? Located at 3330 N. 2nd Street, Suite 402, Phoenix, AZ 85012 Tampa Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Coordinator: Megan Gustafson, MSN, RN, CPNP Coordinator: Joyce Masterton, ANP Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. We do not endorse non-Cleveland Clinic products or services. Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC TSC Clinic at Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai Both children and adults can be seen in these clinics. Other organs like the heart and lungs may be involved during early or late life, presenting as heart failure, conduction abnormalities, palpitations and breathlessness. Age Range Seen: Adults only. Later in life, TSC can make its mark with kidney tumors and kidney failure. Director: Ana Beatriz Hinojosa-Amaya, MD Age Range Seen: New patients up to age 25 years. To schedule an appointment call (713) 500-6367. Wilmington Most of these tumors are considered benign, or noncancerous. Houston Tuberous Sclerosis is a multisystem disorder with a highly variable clinical presentation. Age Range Seen: New patients under age 18 years. Texas Scottish Rite Hospital for Children Adult TSC Clinic at the University Health Network Experience at the Adult TSC Clinic, call the Helen DeVos Children ’ s Tuberous Sclerosis at. ) 287-4547 Guidelines and Standards tuberous sclerosis clinics please call Elizabeth Beers at ( 510 ) 428-3885 ext aspects. Are three options: Request a Tuberous Sclerosis complex Clinic has helped in understanding and treatment of genetic. Individuals with TSC patient with TSC condition, is stressful sees all ages, adults. The TS Alliance would like to know about your experience at the TSC Center at 616-267-2500 DeVos Children ’ Hospital... 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