- 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…
Read More » - 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…
Read More » - Neurological Reserve
Understanding Neurological Reserve
Why It Matters for Superficial Siderosis Suppose you live with superficial siderosis (or care for someone who does). In that…
Read More » - News
Welcome 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…
Read More » - Live Event
Ask the Experts: Superficial Siderosis Q&A Panel
A Rare Opportunity to Ask Questions About Superficial Siderosis in Real Time If you’ve ever wanted to ask a leading…
Read More » - Perspective
Superficial Siderosis Care
Accessing Specialist Care in the United Kingdom There are significant differences between the United Kingdom and the United States in…
Read More » - Treatment Options
CT Myelography in Superficial Siderosis
Advancements in Detecting Dural Leaks In superficial siderosis, a common cause of bleeding is a defect or tear in the…
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 » - Education
Empowering the Superficial Siderosis Community on Rare Disease Day
Today, February 28th, marks Rare Disease Day—a global movement dedicated to raising awareness and advocating for the millions of people…
Read More » - Advocacy
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
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…
Read More » - Personal Stories
Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise
There aren’t really words to truly describe what it’s like going into brain surgery. I remember seeing a row of…
Read More » - Personal Stories
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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