research
- Advocacy
2023 In Summary
A Mixed Bag Like most years, 2023 has been full of up and downs. Awareness raising is going strong, and…
Read More » - News
A Rare Reunion
From Tweetup to Meetup Rhys and Deb, 2019 It had been over three years since I’d first met my friend…
Read More » - Brain Project
One More Family
Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from…
Read More » - Patient Registry
The Superficial Siderosis Patient Registry
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful…
Read More » - News
Introducing Mass General Research Institute
Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new…
Read More » -
The Tissue Donation Project
Research takes a very long time, so as hard as it may be to face, even though some of our…
Read More » - Chelation Therapy
The Deferiprone Trial Results Are In
Does Deferiprone provide a clinical benefit to the superficial siderosis patient? If you remember, the April 2017 edition of The…
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