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Patience

Posted Tuesday April 16, 2019 by Living With Superficial Siderosis

If there is a single lesson our superficial siderosis community should be...

If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight. We always seem to be waiting -appointments, test results, news....

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Patience

Making Our Voice Heard

Posted Friday March 08, 2019 by Living With Superficial Siderosis

Superficial siderosis is an ultra-rare condition with a small patient population. Our...

Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the journey to a diagnosis and then care. Too often hope...

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rare disease week capitol hill

Rare Disease Week 2019 on Capitol Hill

Posted Wednesday February 20, 2019 by Living With Superficial Siderosis

Living with Superficial Siderosis will be heading to Capitol Hill in Washington...

Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare disease advocates, patients, and caregivers from across the country. Representatives...

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Rare Disease Week

Your Daily Medications

Posted Sunday January 27, 2019 by Living With Superficial Siderosis

Imagine living a life that revolves around medication. I know many of...

Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200 pills a week with nine different daily dosage times. What...

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Memory loss

Touching The Positives

Posted Monday January 07, 2019 by Living With Superficial Siderosis

I recently came across an interesting question, If you were cured today,...

I recently came across an interesting question, If you were cured today, what would you do? For people with a chronic condition or rare disease that’s a loaded question. What would...

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chronic illness life

Our Superficial Siderosis Community: Meet Fiona Parkinson

Posted Wednesday December 05, 2018 by Living With Superficial Siderosis

Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her...

Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm, animal menagerie, preserving award-winning homegrown food, and mothering three handsome...

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súper siderosis community members