Time to Rare Up

rarediseaseday.org

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 in 2008 thanks to EURORDIS with 65 countries now adding their voices.  The theme for Rare Disease Day 2018  is…

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Life Expectancy of Superficial Siderosis Patients

life expectancy

Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That…

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Staying Woke:

Superficial Siderosis Awareness

Get Woke   I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandkids ages range from a first-year college student, high school, elementary to toddler. Conversations can be eye-opening. You learn a lot: who’s salty, why something’s lit, and being woke. If you…

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