Susac Syndrome Networking Event

Susac Syndrome Networking Event

Datum: 
06/06/2023

The Department of Neurology with Institute of Translational Neurology University and University Hospital Münster would like to invite you to the Susac Syndrome Networking Event from the 15th to 16th of June 2023 at the Hotel Kaiserhof www.kaiserhof-muenster.com in Münster, Germany.

The aim of this networking event is to improve recognition, understanding, treatment and research on Susac syndrome, a rare autoimmune disease affecting the brain, retina and inner ear. Within this meeting, clinical and scientific experts in the field will exchange current knowledge and address knowledge gaps on (i) causes and pathophysiology of the disease, (ii) improvement of diagnosis and prognosis, and (iii) treatment options. This event will serve as a starting point to set up an International Susac Consortium (I-SuSaC) to lay the groundwork for future scientific collaborations for the patients’ benefit. This meeting will result in a consensus agreement on harmonization of a clinical data respiratory combined with standardized sample processing for a joined Susac biobank.

The voice of the patient will be presented by a patient report and a representative from EURODIS – Rare Diseases Europe www.eurordis.org.
 

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