What is Loss?

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Death.  It’s one of the most taboo subjects.  If you ever want to end a conversation, start talking about death.  Death and the sadness that occurs afterward, are often met by friends and loved ones with attempts to return to happiness as fast as possible, […]

Gaucher Type 3 — Difficulty In Finding A Diagnosis For Rare Disease

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My son, Noah, now 15 years old, first started having health problems as an infant. First, he had asthma, then chronic pneumonia, and as he got older, lots of horrible leg pain that made him writhe on the floor in tears. It was awful! There […]

Are You a Blogger? Join our Blog Hop for RARE disease!

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We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE Disease Day. What is a blog hop? A blog hop is when bloggers write about a common theme/topic […]

Brad Paisley Lends Voice to New Song "Hard Life" to benefit A-T Children’s Project

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Brad Paisley sings new song written by Joe Kindregan, A-T patient BRAD PAISLEY LENDS VOICE TO NEW SONG “HARD LIFE” Written By Joe Kindregan To Benefit A-T Children’s Project NASHVILLE, Tenn.  (Dec. 12, 2011)  Brad Paisley has just recorded a new song, “Hard Life,” available for […]

Your Invited! Regional Essential Health Benefits Sessions Sponsored by HHS

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The Affordable Care Act ensures Americans have access to quality, affordable health insurance.  To achieve this goal, the law ensures plans offered in the new Affordable Insurance Exchanges offer a package of essential health benefits, which are to be defined by the Department of Health […]

Better Access to Patient Longitudinal Data Promises Greater Research Latitude

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Patient longitudinal data which are collected over long periods of time reveal a more complete picture of many rare diseases than temporal data alone. Children suffering from rare diseases are more likely to visit multiple providers of care over long periods of time such as […]

GLOBAL GENES PROJECT ANNOUNCES “WEAR THAT YOU CARE™” DENIM AWARENESS CAMPAIGN FOR RARE DISEASE DAY 2011

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Statistics Show 95% of Rare Diseases Have No FDA Approved Drug Treatments; Only 352 New Drugs Developed and Approved For Tens of Millions of People Since 1983 DANA POINT, Calif. – January 26, 2011 – Monday, February 28, 2011, is the 4th annual Rare Disease […]