Tuberous Sclerosis Canada and the TSC Clinic at Children’s are hosting an Education Day on TSC on Sept 17th in the Chan Centre at CFRI.
Dr. Elizabeth Thiele who is Director of the TSC Clinic at Mass Gen Hospital in Boston will speak. They follow over 400 children and adults. Dr. Peter Crino who is a neurologist who does a lot of research into the mTOR and other pathways will speak about new and future therapies. There will be other Canadian and US speakers.
As many of you know, Neurology started a TSC Clinic in 2012 as about 90% develop epilepsy and currently follow about 90 children. This clinic is held once per month, on first Thursday of every month 1-5pm.
This conference will allow us to learn more about how other centres are organizing care for patients with TSC. In BC, the majority of adults are not followed and fall through the cracks and end up with renal failure, bleeding into AMLs and respiratory disease.