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December 6, 2012

TOPIC: Medical, Patients & Members, Research, Industry

Can IBM Watson Replace Dr. Dhaliwal? Probably Not!

Posted at December 12, 2012 03:28 am by

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 in accelerating the accurate diagnosis of rare and unusual medical disorders — one of the first and most critical steps in assuring quality of care. … READ… Read More

December 3, 2012

TOPIC: Featured News, Medical, Patients & Members, Research, Advocacy, Industry

Patients Will Benefit From New Public-Private Partnership

Posted at December 12, 2012 09:53 pm by

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 partnership specifically focusing on this need. (more…)

November 21, 2012

TOPIC: Patients & Members

Barretstown – a Serious Fun Camp!

Posted at November 11, 2012 07:14 pm by Lisa Sencen

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. (more…)

November 12, 2012

TOPIC: Featured News, Patients & Members

The Story Behind the Rare Disease Day School Curriculum

Posted at November 11, 2012 04:39 pm by

Two weeks ago, as my flight landed in Boston, I stepped outside of the plane with a long tube in my arm, inside of which was a very special poster. It was the poster about a project I had completed with NORD. I was about to present this poster at the 2012 National Society of Genetic Counselors’ (NSGC) Annual… Read More

October 31, 2012

TOPIC: Medical, Patients & Members, Research

Creative Collaborations May Be Key to Reducing Chemotherapy Risks

Posted at October 10, 2012 01:33 pm by Marsha Lanes

My friend’s 18-year-old son died recently following a 6-month battle with acute myeloid leukemia. There are many different stories I could tell about Tucker’s experience that are all too familiar to those in the rare disease community: (more…)