Living with superficial siderosis – the patient’s journey

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 UCL 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". It is timed to mark the Rare Disease Day and the World Hearing Day. They hope 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 panel please submit them here: Your questions

Additional resources related to understanding iSS and some of the research undertaken by the group can be found on their research pages.

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Further information on the event