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Archives for: August 14th, 2015

Rare Action™ Road Tour, Salt Lake City, UT

Written by Heidi Ross on August 6, 2015

SLC,UT

Greetings from Salt Lake City,

This is part 1 of 2 of two posts on SLC. Tomorrow I will post on our State Ambassador, Gina Szajnuk. Today, I’m happy to share a bit about another local advocate who is doing great work… Read More

Living With Essential Thrombocythemia (ET)

Written by Mary Dunkle on June 23, 2014

In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had  been living with this disease for at least six years prior to diagnosis. Read More

Genzyme and NORD Establish Program to Help Undiagnosed Patients with Rare Diseases

Written by Mary Dunkle on December 16, 2013

CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions.  The fund will help those who have applied to the National Institutes of Health… 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