There is no greater force than the sense of urgency you experience when someone is diagnosed with Superficial Siderosis. This ultra-rare neurodegenerative disorder affects less than one in three million persons worldwide.
Request your free Superficial Siderosis awareness wristband today. You may request up to ten 1/2" debossed silicone wristbands. Shipped from points in the United States, United Kingdom, and Austraila while supplies last.
How does a small patient community move forward? Continue to visit multiple specialists in an effort to survive the effects of this disorder? Or do we tackle this problem head-on, together as a community, to empower research?
The SSRA raises and distributes research funding to the newly founded Superficial Siderosis Clinic and Research Laboratory. Located at Mass General Hospital, Boston, patients may consult the clinic from anywhere in the U.S.
2021 will see the launch of our first SSRA sponsored research study designed to explore the possibility that boosting brain urate by treatment with an antioxidant could slow the brain cell degeneration of Superficial Siderosis patients. This project might substantially shorten the time needed to develop a full neuroprotection trial. Optimizing this first study’s crucial characteristics should considerably enhance the likelihood of future therapies.
Proposed 2021 Superficial Siderosis Veterans Letter Campaign (details soon)
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. There are over 7,000 identified rare diseases and disorders.Superficial Siderosis is classified as an ultra-rare disorder with less than 300 cases identified in the U.S. and a yet to be determined number worldwide.
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