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Treating SEGA in Patients with Tuberous Sclerosis Complex
Treating SEGA in Patients with Tuberous Sclerosis Complex administrator 4 Views • 2 years ago

At the American Academy of Neurology (AAN) Annual Meeting in Vancouver, Canada, we talked with Steven Sparagana, MD of the Texas Scottish Rite Hospital for Children about subependymal giant cell astrocytoma (SEGA) treatment patterns among patients with tuberous sclerosis complex (TSC). SEGAs are benign brain lesions that occur in 10% to 20% of TSC patients.

Reference
Krueger D, Song J, Swallow E, et al. Subependymal Giant Cell Astrocytoma Treatment Patterns among Patients with Tuberous Sclerosis Complex. Poster presented at: 68th Annual Meeting of the American Academy of Neurology; April 15-21, 2016; Vancouver, BC.

To read the abstract, go to http://www.abstractsonline.com..../pp8/#!/4046/present

FAQ: Tuberous Sclerosis and Skin Problems
FAQ: Tuberous Sclerosis and Skin Problems administrator 2 Views • 2 years ago

Le Bonheur Dermatologist Teresa Wright, MD, answers frequently asked questions about skin problems that arise as a result of tuberous sclerosis complex (TSC).
Achievements in Tuberous Sclerosis Research
Achievements in Tuberous Sclerosis Research administrator 3 Views • 2 years ago

Clare Stuart, Project Manager with The Australasian Tuberous Sclerosis Society, gives a presentation to families affected by Tuberous Sclerosis Complex (TSC).
Recorded at the 2013 Family Conference of the Australasian Tuberous Sclerosis Society. Find out more at www.atss.org.au

2. Overview of Tuberous Sclerosis Complex - Hindi Summary
2. Overview of Tuberous Sclerosis Complex - Hindi Summary administrator 1 Views • 2 years ago

Hindi Summary of Talk by Dr Darcy Krueger, Director, Tuberous Sclerosis Clinic, Cincinnati Children's Hospital Medical Center at International Autism Conference organized by SOPAN and Kokilaben Dhirubhai Ambani Hospital.
Tuberous Sclerosis Complex and the Kidneys
Tuberous Sclerosis Complex and the Kidneys administrator 3 Views • 2 years ago

Dr Tonya Kara, paediatric nephrologist from Starship Children's Hospital and Dr Murray Leikis, Nephrologist from Wellington Hospital speak at the 2014 TSC Family Conference hosted by Tuberous Sclerosis Australia and Tuberous Sclerosis Complex New Zealand in Auckland in November 2014.
The Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance administrator 2 Views • 2 years ago

At the 2013 DIA NORD Conference on Rare Diseases & Orphan Drugs, we had the privilege of talking to Kari Luther Rosbeck, President and CEO of The Tuberous Sclerosis Alliance. In this interview, Kari talks about the origins of the Alliance.
Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Symptoms vary but the ones most commonly associated TSC are the central ones including, seizures, developmental delay, intellectual disability and autism. At present there is no cure for TSC however Afinitor (everolimus) is approved to treat
1) patients with subependymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis who require therapeutic intervention but are not candidates for curative surgical resection
2) Treatment of adults with renal angiomyolipoma and tuberous sclerosis complex (TSC) not requiring immediate surgery.
For more information about the Alliance, visit www.tsalliance.org

2014 World Tuberous Sclerosis Complex (TSC) Conference Slide Show
2014 World Tuberous Sclerosis Complex (TSC) Conference Slide Show administrator 3 Views • 2 years ago

From July 3-6, the Tuberous Sclerosis Alliance hosted the 2014 World TSC Conference in Washington, DC. The event attracted approximately 600 participants from 21 countries, including adults and children with tuberous sclerosis complex (TSC), their families and more than 80 of the globe's top TSC experts.
What Is The Orphan Disease Tuberous Sclerosis? What are its symptoms?
What Is The Orphan Disease Tuberous Sclerosis? What are its symptoms? administrator 1 Views • 2 years ago

The health of Tuğra Cihangir, who has been understood to have epileptic seizures due to Tuberous Sclerosis, an orphan disease, is improving day by day with the treatment process which has started at Medipol.
#ChildHealth #Epilepsy #Tuberosclerosis #Medipol
Diagnosis, Surveillence and Management of Tuberous Sclerosis Complex
Diagnosis, Surveillence and Management of Tuberous Sclerosis Complex administrator 0 Views • 2 years ago

Dr David Mowat, Clinical Geneticist at Sydney Children's Hospital, delivers the keynote presentation at the 2014 Family Conference hosted by Tuberous Sclerosis Australia and Tuberous Sclerosis Complex New Zealand in November 2014 in Auckland.
Questions & Answers About the Tuberous Sclerosis Alliance (TS Alliance)
Questions & Answers About the Tuberous Sclerosis Alliance (TS Alliance) administrator 0 Views • 2 years ago

TS Alliance President & CEO Kari Luther Rosbeck addresses questions about the organization as well as tuberous sclerosis complex (TSC), a rare genetic disease that causes tumors to form in vital organs. TSC is also a leading genetic cause of both epilepsy and autism. Video compliments of www.givinglibrary.org.

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