From Tweetup to Meetup It had been over three years since I’d first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and… Read More... "A Rare Reunion"
SSRA Press Releases
Community Forum Launches
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect globally with those diagnosed with superficial siderosis, you might be surprised how many SS patients do not have a Facebook… Read More... "Community Forum Launches"
The Cochlear Implant Experience
Is A Cochlear Implant Right For You? Hearing loss affects 95% of superficial siderosis patients. Specialized hearing aids designed to help word recognition in bilateral sensorineural hearing loss work very well for most patients in the early stages. Unfortunately, many… Read More... "The Cochlear Implant Experience"
Introducing Mass General Research Institute
Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research Institute. What better way to celebrate than a giveaway! With a few clicks… Read More... "Introducing Mass General Research Institute"