Posts tagged with rare-disease

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

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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When Small Details Equal Giant Victories

Posted Tuesday August 21, 2018 by Living With Superficial Siderosis

Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this...

Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was officially recognized by the U.S. Social Security Administration. On August 20,...

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Time to Rare Up

Posted Monday February 05, 2018 by Living With Superficial Siderosis

Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities...

Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over 7000 rare diseases join forces to raise awareness. The movement began in Europe...

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Staying Woke

Posted Wednesday November 29, 2017 by Living With Superficial Siderosis

  I like listening (ok, eavesdropping) to my granddaughters when they find...

  I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandchildren range in age from a college student, high school, elementary to toddler....

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