Out-of-State Medicaid Policy: Accepts Illinois only. For more information about the UAB TS Clinic and to schedule an appointment, contact Jessica Krefting, BSN, RN at (256) 533-0833. Age Range Seen: Children and adults The TS Center at New York University Langone Medical Center Age Range Seen: Children and Adults* 4543. Coordinator: Jamie MacDougall, RN, BSN, CPN Each TSC Center of Excellence must submit an application specifying how it fulfills each of 11 Core Standards and 14 Gold Standards developed by the TS Alliance. Coordinator: Valerie W. Chan, RN, BScN, CNN(C) Hospital Universitario “José Eleuterio González’ Universidad Autónoma de Nuevo León Mumbai, Maharashtra Louisville Provides information about local and regional resources. Co-Director: Katherine Taub, MD Director: Sepideh Mokhtari, MD Download TSC Specialist List. Co-Director: Erika Axeen, MD (Pediatrics) Coordinator: Vanessa Léger, RN Out-of-State Medicaid Policy: No restrictions. Age Range Seen: Children and Adults 9500 Euclid Avenue, Cleveland, Ohio 44195 |. clinic, and offers diagnosis and care to 388 affected children and adults from various parts of the country (Peron et al., 2018). Director: Michal Tzadok, MD Texas Scottish Rite Hospital for Children Age Range Seen: Adults 18 years and older. For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123. Little Rock Director: Stacie Stapleton, MD 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. Cleveland Out-of-State Medicaid Policy: Does not accept any. The Tuberous Sclerosis Clinic, part of the Brain Care Institute at UPMC Children’s Hospital of Pittsburgh, meets monthly to care for children and adults with this tuberous sclerosis complex (TSC).It is staffed by trained pediatric and adult neurologists with the support of nurse practitioners with prompt referrals to multiple subspecialists with expertise in this area. Out-of-State Medicaid Policy: Requires one-time agreement with UCLA. Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital Age Range Seen: Children and Adults Coordinator: Shannon Brophy, RN, MSN, ANP-BC When medical treatment fails, evaluation for the possibility of epilepsy surgery should be considered early in every patient with TSC. To schedule an appointment at the Adult TSC Clinic, call (720) 848-2087. For more information about the clinic call (901) 287-4547. Age Range Seen: Children and Adults Orange Clinic Ambassador: Carly Kaye, carly.e.kaye@gmail.com Baltimore 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. For more information and to schedule an appointment call (551) 497-5470. Richmond 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. Seattle Birmingham Clinic Ambassadors:  Nilsa Roberts, nilsaa26@aol.com Director: Francis M. Filloux, MD For Clinic Information and to schedule an appointment call (727) 767-3675. Acting Director: Michael Kohrman, MD For clinic information and to schedule an appointment, call (312) 996-7865. 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. Age Range Seen: New patients 12 years and older. Clinic Frequency: Every other week. Clinic Frequency: Daily Age Range Seen: Children and Adults. Age Range Seen: Children and Adults* Age Range Seen: Children and Adults. Clinic Frequency: Weekly on Thursdays. TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. For more information about the clinic contact Michelle Sanders at (803) 434-8333. For Urgent Appointments contact Raeann Moore, RN at 616-267-2954. Age Range Seen: Children who are enrolled in CRS, the Arizona state-managed Medicaid program. Age Range Seen: Children and Adults Age Range Seen: Children and adults 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. New York City Clinic Ambassador: Heather Morris, Heather.Morris@atriumhealth.org Four patients seen simultaneously by a group of six providers (epilepsy, neurology, cardiology, nephrology, psychiatry and psychology). 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. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. Coordinator: TBD The Hospital of the University of Pennsylvania (HUP) and Children’s Hospital of Philadelphia (CHOP) For more information or to schedule an appointment call  Amy Davis at (682) 885-7259. The support they need is the support you can give. Clinic Frequency: Daily Since 2006, Children’s Hospital’s Tuberous Sclerosis Complex Clinic has helped in understanding and treatment of this genetic disorder. Inform the scheduler that you are calling to make an appointment to see Dr. Ashwal in the TSC Clinic. Phoenix Clinic Ambassador: Mark Martin, markamartin2002@yahoo.com To schedule an appointment, call Gabriela Martinez at (786) 624-3552 or email at gabriela.martinez@nicklaushealth.org. Clinic Frequency: Monthly, every second or fourth Wednesday. 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. *For adults with TSC, schedule an appointment with Dr. Jeffrey Loeb. Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. Co-Director: Melissa Gregory, MD Clinic Frequency: Monthly, every first Wednesday morning (subject to change). TAND Unit Director: Tanjala T. Gipson, MD To schedule an appointment with Dr. Liu call his coordinator, Crystal Ballard at (919) 660-3234. Co-Director: Surya Prasadarao Rednam, MD, MS Director: Steven DeRoos, MD Coordinator: Maria Lewek, RN, BSN Director: Ali Mostajelean, MD Age Range Seen: New patients up to age 21 years. TSC Clinic at Nemours/duPont Hospital for Children The TS Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Clinic Frequency: Pediatrics–2-3 Thursdays a month, subject to change. 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. Tuberous Sclerosis Complex (TSC) is a genetic condition that causes benign (noncancerous) tumors to form on a child's organs. The Neurofibromatosis and RASopathy Program at Children’s Hospital of Wisconsin Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Ambassador: Dana Holinka, emme01@msn.com Co-Director: Saba Ahmad, MD For Appointments and Clinic Location: If you are a parent of a child 17 years or younger call (650) 723-0993. Coordinator: Blossy Lopes, Senior Nurse Any patients with urgent concerns are prioritized and seen as quickly as possible. Co-Director: Charuta Joshi, MBBS at Children’s Hospital Founding Director: David N. Franz, MD Nashville Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. Co-Director: Mary Kay Koenig, MD Esta clínica cuenta con un doctor o un empleado que habla un poco de español (Dr. Age Range: Adults Age Range: Children and Adults up to age 60 years. 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