Inside the 2025 Research Roundtable
How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial SiderosisOn June 13, 2025, the final morning of the Superficial Siderosis Symposium, neurologists, a neurosurgeon…
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Inside the 2025 Research Roundtable
How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis On June 13, 2025, the final morning of the Superficial Siderosis Symposium, neurologists, a neurosurgeon, an MRI researcher, a hematologist, a specialist in audiovestibular Medicine, a clinical fellow in neurology, and audience members gathered together at the [...]
Read MoreA Heartfelt Evening and Inspiring Patient Day
The 2025 Superficial Siderosis Symposium Our reception evening on June 11 started with perfect early summer weather. The excitement we felt as SSRA organizers was quickly eclipsed by the arrival of our guests. There was laughter, hugs, and the joy of finally meeting people face-to-face after years of online interactions. [...]
Read MoreWelcome Rachel Kenner, New Editor of Living With Superficial Siderosis
Living With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research [...]
Read MoreSupporting Our Community
What the SSRA Offers for Superficial Siderosis Patients, Caregivers, and Clinicians At the Superficial Siderosis Research Alliance (SSRA), our mission is to empower patients, caregivers, and medical professionals with the resources and tools they need to better understand, manage, and navigate life with superficial siderosis (SS). Whether you’re newly diagnosed [...]
Read MoreA Milestone for Our Community
A rare disease diagnosis is never easy for the person receiving it, the family absorbing it, or the doctor delivering the news. Our first instinct is always to search for answers, but for those of us living with or supporting someone with superficial siderosis, those answers are often elusive. At [...]
Read MoreSymposium 2025 Countdown
An Unforgettable Symposium Experience Awaits As we move into the final weeks before the first Superficial Siderosis Symposium, excitement is building across the SSRA community and beyond. What began as a bold idea is now set to become a landmark event in the rare disease world. With over 200 in-person [...]
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