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Archives for: April 21st, 2014

Engineering Treatments for Rare Disorders

Written by Marsha Lanes on April 21, 2014

3-D printing is an exciting technology that has shown great promise in the treatment of several rare disorders.  Bioprinting is a form of 3-D printing in which cells are printed or deposited on a surface layer by layer in order to produce a full organ. Lab-built organs have been shown… Read More

A CRISPR Approach to Genome Editing

Written by Marsha Lanes on December 4, 2013

Genome editing is a process that involves cutting out mutations in DNA and replacing them with new genetic material.  This is an exciting idea because if it can be refined to a level that is safe and effective, the prospect of eradicating genetic diseases is no longer science fiction.  Read More

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