Living with superficial siderosis – the patient’s journey
18 February 2022, 2:00 pm–3:00 pm
A dedicated virtual event sharingÌýexperiences from patient, clinician and researcher perspectives.
Event Information
Open to
- All
Organiser
-
Dr Natallia Kharytaniuk
Location
-
N/A onlineN/A onlineN/A onlineN/A online
Infratentorial superficial siderosis (iSS) is a rare but sometimes disabling neurological disorder for which awareness among medical professionals is low; iSS has received very little research attention, so understanding and treatment options are limited. A dedicated multidisciplinary team at Ïã¸ÛÁùºÏ²Ê are researching iSS in more depth.
The clinical research team would like to share their experience from patient, clinician and researcher perspectives, by hosting a dedicated information-sharing virtual event titled "Living with superficial siderosis – the patient’s journey". ItÌýis timed to mark the Rare Disease Day and the World Hearing Day. TheyÌýhope that the event can be an additional and important source of information for patients newly diagnosed and living with iSS, their carers and families, clinicians and interested members of the public.
If you have any questions for the panelÌýplease submit them here:Ìý
Additional resources related to understanding iSS and some of the research undertaken by theÌýgroup can be found onÌýtheir research pages.