Supporting 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 or have been living with SS for years, we want you to know you are not alone. We are dedicated to supporting you through this journey.
Here’s a look at some of the key programs, materials, and support systems we offer across our network:
Updated Superficial Siderosis Information Brochures
We proudly offer our newly updated Superficial Siderosis Information Brochures, which are now available for download and print. The SSRA Medical Advisory Board carefully reviews and approves these brochures, which are designed to provide patients, families, and clinicians with the most current and reliable information.
Link: https://ssra.livingwithss.com/resources/superficial-siderosis-information/
Free Medical Alert ID Card Program
For patients living with SS, having fast access to medical information during an emergency is critical. Our Medical Alert ID Card is a pocket-sized tool that communicates essential facts about superficial siderosis to emergency personnel. It includes condition-specific information and emergency contact fields, helping bridge the communication gap in urgent situations.
The ID card is free and can be requested directly through our website.
Link: https://ssra.livingwithss.com/patient-medical-id-cards/
Home-Based Balance & Mobility Training with MedBridge GO
One of the most common symptoms of SS is vestibular dysfunction associated with the effect of free iron on the eighth cranial nerve, which affects balance and coordination. Through a partnership with MedBridge, we offer access to a progressive home-based exercise program via the MedBridge GO app. This customized vestibular training plan includes beginner, intermediate, and advanced exercises—all of which can be performed safely at home.
We encourage patients to download the app, follow the plan, and actively maintain their mobility.
Program Overview (PDF): https://ssra.livingwithss.com/wp-content/uploads/2023/08/Balance-and-Mobility.pdf
Physician Clinical Care Guidelines
To improve care across specialties, the SSRA has published two sets of medical guidelines:
1. Clinical Care Management Guideline – Created to help physicians understand how to support SS patients across various stages of progression and treatment.
Link: https://ssra.livingwithss.com/wp-content/uploads/2023/08/Clinical-Care-Management-Guideline.pdf
2. Neurology Guideline – Targeted guidance for neurologists who manage superficial siderosis cases, including symptom tracking, imaging protocols, and follow-up care.
Link: https://ssra.livingwithss.com/wp-content/uploads/2023/08/Neurology-Guideline.pdf
Global Physician Directory
Our Global Physician Directory has been a work in progress since the early days of Living with Superficial Siderosis. It began as a grassroots effort to help patients find doctors with real-world experience treating SS. Every physician listed has been patient-submitted, meaning they were personally recommended by someone living with superficial siderosis.
This directory includes specialists in neurology, ENT, hematology, and physical rehabilitation. While not all physicians are SS experts, they are recognized for their willingness to listen, learn, and work collaboratively with patients. We welcome ongoing submissions as we continue building this valuable resource.
Link: https://livingwithss.com/find-a-doctor/
Brain Tissue Donation Program
As a research-driven nonprofit, we are dedicated to advancing understanding of this rare disease. Our Tissue Donation Program allows patients to contribute to scientific discovery through postmortem brain donation. In partnership with medical institutions, we ensure ethical collection and use of tissue samples to help future generations.
While it is a profoundly personal decision, participants help us move closer to identifying biomarkers and potential treatments.
Link: https://livingwithss.com/tissue-donation-program-acknowledgment/
Global Patient Registry
The SSRA oversees the world’s only Superficial Siderosis Global Patient Registry, which is instrumental in driving research. By joining the registry, patients and caregivers contribute data that helps researchers understand symptom patterns, disease progression, and treatment efficacy.
Every voice matters—and your participation has the power to guide future breakthroughs.
Link: https://superficialsiderosis.org
Coming Soon: A New Chapter for Our Digital Magazine
We’re excited to announce that Living With Superficial Siderosis™, our digital magazine for patients and caregivers, is transforming! Over the next year, you’ll see a refreshed design, new editorial direction, and even more real-life stories, research highlights, and caregiver perspectives. Stay tuned for updates as we continue building a platform that speaks directly to your experiences.
Link: https://livingwithss.com
Our commitment to the SS community is unwavering, whether we offer medically reviewed materials, emergency tools, or research initiatives. We’re here to walk this journey with you, providing support, sharing knowledge, and amplifying your voice every step of the way.
If you haven’t already, explore the resources above and share them with your doctors, family, and support team.
Because every step we take together makes a difference.
– The SSRA Team
Superficial Siderosis Research Alliance
