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Archives for: December 16th, 2013

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

Campaign to Educate State Legislators for Rare Disease Day

Written by admin on December 14, 2012

Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28,… 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