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- Research
FDA Grant Application to Advance Superficial Siderosis Research
A MAJOR MILESTONE FROM THE SSRA MEDICAL AND SCIENTIFIC ADVISORY COMMITTEE Pushing the Boundaries of Rare Disease Research This month…
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NORD Living Rare Study
The Superficial Siderosis Research Alliance is a member of the National Organization of Rare Disorders (NORD). The mission of NORD…
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Best Hearing Aids for 2025
Hearing Aids for Sensorineural Hearing Loss A few weeks ago, we received an email asking for advice on which hearing…
Read More » - Personal Stories
Both a Lover of Music and a Passionate OT, Whose Struggles With SS Have Had a Significant Impact: This is Tim McPherson’s Story
It all started on Groundhog Day in 1977. It was my first year attending university in Michigan, my home state.…
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Living Your Best Life
- Best Life
Reclaiming Your Independence, A Guide to Managing Hearing Loss
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and…
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Patient Stories
- Personal Stories
Julianne’s Superficial Siderosis Odyssey
Originally published in June 2021, we’re revisiting some of the most inspiring personal journeys gracing our pages. Today, we’re peeking…
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A Year of Struggle and Change
A year of struggle and change; that’s what it has been for Gary, our family, and myself. Emerging from the…
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Deborah Hatch
Rare Disease UK “You’re quite a celebrity around here,” my neurologist says, as mum and I meet him in London…
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A Decade of Strength: Gary’s Journey with Superficial Siderosis
It’s hard to believe it’s been 10 years since we began this journey in 2014. When we first received Gary’s…
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Inescapable Realities
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend…
Read More » - Best Life
The Cochlear Implant Journey – A Year On
Background It would be an understatement to say it has been life changing for me to have a perception of…
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