Superficial Siderosis Research Alliance

Who We Are

Superficial Siderosis is a rare neurological condition that stealthily invades the brain and spinal cord, leaving a trail of progressive disability in its wake. It's a disorder that often goes unrecognized, leaving those affected to grapple with its debilitating effects in the shadows.

The Superficial Siderosis Research Alliance (SSRA) was born out of the urgent need to raise awareness of this condition. We are a dedicated group of patients, caregivers, and medical professionals committed to raising awareness, fostering research, and ultimately finding a better quality of life for everyone affected by this devastating disorder.

However, the journey is not easy. Small patient communities like ours face an uphill battle in garnering attention and funding for research. But we believe in unity and the strength of shared purpose.

Understanding This Rare Disorder

Superficial Siderosis is caused by the buildup of iron particles in the outermost layers of the brain, known as the subpial layer. Over time, this buildup can lead to various symptoms and complications. Imagine your brain is like a city, with different areas responsible for specific tasks. Now, imagine if toxic dust (in this case, iron particles) started to settle over the city, disrupting its normal functioning. That's what happens in Superficial Siderosis. The symptoms of Superficial Siderosis can vary greatly from person to person, depending on where the iron has been deposited. Some common symptoms include hearing loss, balance and mobility problems, and difficulty with coordinated movements. However, the condition can also lead to more complex issues such as cognitive impairment, difficulty swallowing, and bladder or bowel dysfunction.

We are passionately committed to supporting healthcare professionals who specialize in the care and treatment of superficial Siderosis. Together, we work to enhance the quality of care for individuals affected by this rare neurological disorder.

Our organization is focused on delivering best-practice care education, offering up-to-date information, and expanding access to vital educational tools. Our resources are designed to assist doctors, nurses, and every healthcare team member in providing the most effective care for patients with superficial Siderosis.