Read The Latest
- Research
NORD Living Rare Study
The Superficial Siderosis Research Alliance is a member of the National Organization of Rare Disorders (NORD). The mission of NORD…
Read More » - Hearing
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.…
Read More » - Research
Charting a New Course for Superficial Siderosis
Superficial Siderosis Symposium Research Roundtable On June 13, 2025, the final morning of the Superficial Siderosis Symposium, a group of…
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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
- Advocacy
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
Read More » - Personal Stories
It’s OK not to be OK
It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been…
Read More » - Personal Stories
Finding Harmony Through Challenge: Mikko Pettinen’s Story
A Life Shaped by Music In the heart of Helsinki, where jazz fills the air and creativity thrives, trumpeter and…
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.…
Read More » - Personal Stories
The Struggle Of Dual Neurological Conditions
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling…
Read More » - Personal Stories
My Last Music Festival
Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since…
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