Published April 21, 2014 by NORD
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 …
Continue reading “Engineering Treatments for Rare Disorders”
Read morePublished December 16, 2013 by NORD
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 …
Read morePublished December 4, 2013 by NORD
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 …
Continue reading “A CRISPR Approach to Genome Editing”
Read morePublished October 23, 2013 by NORD
NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis? We were stunned at …
Read morePublished September 4, 2013 by NORD
Even though Gaucher disease is one of the better known rare diseases and diagnostic testing is available, some patients still go for 10 years or longer without getting an accurate …
Continue reading “Even “Well Known” Rare Diseases Pose Diagnosis Problems”
Read morePublished August 1, 2013 by NORD
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 …
Continue reading “Informed Consent in Biobank Research”
Read morePublished June 14, 2013 by NORD
Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and …
Continue reading “Supreme Court Decision Consistent With Longstanding NORD Position”
Read morePublished March 12, 2013 by NORD
Exomes are big news. Sequencing of the protein-encoding part of the genome is increasingly solving medical mysteries in children.
Read morePublished December 6, 2012 by NORD
Everyone in the rare disease community who watched IBM’s “Watson” computer perform on “Jeopardy” early this year probably started to wonder about the potential of “Watson-like” systems to assist doctors …
Continue reading “Can IBM Watson Replace Dr. Dhaliwal? Probably Not!”
Read morePublished December 3, 2012 by NORD
FDA Commissioner Margaret Hamburg, MD, today announced a new public-private partnership to develop regulatory science that will speed patient access to new medical device technologies. This is the first public-private …
Continue reading “Patients Will Benefit From New Public-Private Partnership”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.