Reflections
Recently our Australian SSRA director Fiona stumbled upon an Instagram photo shared by another rare…
Biobanks Are Transforming Research
The Importance of Biobanks in Rare Disorders The design of the Superficial Siderosis Patient Registry…
Auction Happenings
Let’s Get Ready to Rumble I have to say I’m a little jealous. There are…
Why Superficial Siderosis Research Matters
Recently I’ve been working on a new funding application for a much larger superficial siderosis…
A Digital Face to Face on Capitol Hill
Rare Disease Legislative Advocacy In A Virtual World Every year representatives from rare disease organizations…
A Celebration of Life and Memory
On Saturday, June 26, 2021, after struggling to breathe for nearly 30 hours, my Mom…
Living With Superficial Siderosis
Saturday morning may have begun at our local community urgent care but it soon turned…
A Whale Of An Idea!
Meet Children’s Author, Robert Cameron Robert Cameron has seen the world. Graduating with a degree…
Our Journey Begins
Some say we’ve taken on an impossible task. Tilting at windmills. You’ll never raise the…
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