News from the Swiss TSC Network
Tuberous sclerosis complex (TSC) is a rare genetic disease, which affects multiple organs. The management of patients with this disease is usually very complex and requires diligent multidisciplinary medical care, both in children and adults.
Prof. Dr. med. Andreas Serra, Co-President
Dr. med. Patricia Dill Co-President
Yet, so far there was no structured platform addressing the needs of the persons concerned, or providing professional information for the different parties involved in the care of patients with TSC in Switzerland.
Therefore, we felt the necessity to create a network for TSC in Switzerland to address unmet needs, such as increasing the awareness of this condition, defining a Swiss standard of care, developing clinical practice guidelines, establishing a Swiss TSC cohort, managing transition from pediatric to adult care, establishing a comprehensive list of qualified TSC experts and centers, sharing best practice among health care professionals, facilitating networking between stakeholders, such as care givers, patients, funding organizations, insurances, pharmaceutical companies, providing continuous medical information and updates, offering expert advice and consultation and providing information for patients, care givers, insurances. We are committed to improving the treatment of TSC patients in Switzerland.
Agency: Klinik Hirslanden – Institut für Allgemeine Innere Medizin und Nephrologie – Witellikerstrasse 40 – CH-8032 Zürich
Tel +41 44 387 20 70 – Fax +41 44 387 20 78 – kathrin.kocher[at]hirslanden.ch