The first week of December marked the third international meeting of the RareConnect team. I joined my fellow community managers in sunny Barcelona, Spain to meet and plan 2013 initiatives for RareConnect. read more >
NORD has strongly supported the establishment and expansion of the Compassionate Allowances Program created four years ago by Social Security Commissioner Michael Astrue and his staff. This program fast-tracks the review of applications for disability assistance from people with devastating and, in many cases, rare diseases.
To illustrate the impact this program has had on the lives of many patients and their families, we are sharing with you the following story sent to us by a young wife and mother named Katie. read more >
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, 2013). read more >
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 more >
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. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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