Rare Disease Day 2016

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Not too long ago, we blogged about Rare Diseases. Rare Disease Day falls on February 29th this year, a day some would argue is the rarest of 2016. If you know anything about rare diseases, perhaps...

What is a Rare Genetic Disease?

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My husband has type 1 diabetes, a currently incurable disease. Nicholas was diagnosed at age 26, just six months after we were married. He had been losing weight for no apparent reason, and then he...

Jeans For Genes

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The last few days of summer are slipping through your fingers. We are nearing the end of another work week and the beginning of another weekend that holds the potential for adventure, time with loved...

How to Discuss Genetic Disease With Your Loved Ones

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There are over 6,000 rare diseases identified worldwide. Although each disease is individually rare, about 30 million people are living with a rare disease in the U.S. alone. Approximately 80 percent of rare diseases are...

National Fragile X Syndrome Awareness Day

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  Fragile X syndrome is a genetic condition that affects 1 in 4,000 boys and 1 in 8,000 girls worldwide, and yet many people have never heard of it. July 22nd marks the 14th anniversary...

Living With A Rare Disease: The Strength of Family

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Worldwide, there are between 5,000 to 7,000 rare diseases in existence. For those living with a rare disease finding access to proper care or an appropriate network of support can pose a significant challenge. Today...

Living With A Rare Disease: Writing Through Chronic Illness

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Worldwide, there are between 5,000 to 7,000 rare diseases in existence.  For those living with a rare disease finding access to proper care or an appropriate network of support can pose a significant challenge.  Today...

Living with a Rare Disease: A New Perspective on Gardner Syndrome

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Worldwide, there are between 5,000 to 7,000 rare diseases in existence.  For those living with a rare disease finding access to proper care or an appropriate network of support can pose a significant challenge.  Today...