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Archives for: August 1st, 2013

Informed Consent in Biobank Research

Written by Marsha Lanes on August 1, 2013

Genetic biobanks, storage facilities for DNA, genetic data and tissue samples, are becoming more prevalent in the rare disease community.   The information and samples can be made available to approved researchers for clinical studies, but unlike clinical trials, there is usually no personal benefit or follow-up provided to participants.  Read More

Privacy Protection in Whole Genome Sequencing

Written by Marsha Lanes on January 15, 2013

Whole genome sequencing (WGS) is the genetic test that determines the order of all 3 billion letters in a person’s DNA, and is a technology that has become well known to the rare disease community.  It can reveal not only the genes responsible for production of an abnormal protein associated… Read More

Barretstown – a Serious Fun Camp!

Written by Lisa Sencen on November 21, 2012

When I arrived through the gates at the Barretstown camp, I was eager to meet my campers and fellow group of volunteers, caras, Gaelic for friend. What I didn’t know is what a lasting impact this camp, set in Ballymore Eustace, Ireland, would have on my life. Read More