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Chase Community Giving Summer 2010 on Facebook, rare disease ticket
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Paramyloidosis Observance Day
Paramyloidosis, also known as familial amyloid polyneuropathy, Corino de Andrade’s disease is an inherited neurodegenerative condition… Continue Reading
Community Building Tools, a technology conference recap.
Before I forget everything I learned in early June at a technology conference, here goes. Use good content to build your audience (and… Continue Reading
Transferred To Siberia – A Diagnosis of Mitochondrial Encephalomyopathy
When my daughters were diagnosed with autism at age 2, I stumbled across the essay “Welcome To Holland” by Emily Perl Kingsley, as all… Continue Reading
The Children's Rare Disease Network Launches Valuable Informational Blog
R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. Dana Point, Calif. (June 9, 2010)… Continue Reading
Why Rare Disease Research Matters, by Leslie Gordon
The Progeria Research Foundation (PRF) was formed 11 years ago to find the cause, treatment, and cure for Progeria.  Progeria is a rare,… Continue Reading
What is the matter with Tarsila? An Undiagnosed Medical Disorder.
Tarsila is a year-and-a-half-old girl who suffers from an undiagnosed medical disorder. She cannot sit on her own or crawl, she still has no… Continue Reading

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Sep 14

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