Rare Diseases And Disorders

Pictures

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Speakers of the Social Issues Round Table at the Genetics and Rare Diseases conference Speakers at this round table included representatives of drug companies the Genetic Alliance

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News Briefs Conference in Korea Focuses on Rare Diseases The Genetic and Rare Diseases Center of the Korea National Institute of Health hosted a two day symposium at Yonsei Medical Center in Seoul South Korea recently NORD was represented at this

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Editor s note This story is part of a series NORD is compiling to promote awareness of rare diseases and the special challenges that individuals and families affected by them must overcome Jana Monaco s career as an advocate began the day she realized that her son Stephen s ordeal was preventable If Jana and her husband Tom had known that Stephen was born with a metabolic

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Rare Diseases and Disorders

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Fabry Disease Patients with Fabry disease are deficient in a particular enzyme involved in the breakdown of fats which causes a buildup of fat in their blood vessels and organs The symptoms of this

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Christina Greek Winald left of the Swedish Information Centre for Rare Diseases and Henrietta Hyatt Knorr of the NIH Office of Rare Diseases FDA DIA Sponsors Orphan Drug Conference In honor of the 25th anniversary of the Orphan Drug Act the Food and Drug Administration FDA and the Drug Information Association DIA co sponsored a one day conference recently on The

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Signing the Memorandum of Understanding between NORD and the Korean NIH

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Editor s note This story is part of a series NORD is compiling to promote awareness of rare diseases and the special challenges that individuals and families affected by them must overcome Jana Monaco s career as an advocate began the day she realized that her son Stephen s ordeal was preventable If Jana and her husband Tom had known that Stephen was born with a metabolic

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Stephen C Groft PharmD Director of the Office of Rare Diseases NIH and Edward Boyer CEO of Mercy Medical Airlift and NORD Board Member

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Conditions and Diseases Rare Disorders

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News Briefs NORD Staff and Rare Disease Researchers Describe Their Work for Wife of President of Germany Attending the recent meeting in New York were from left Sami I Said MD Chairman of NORD s Medical Advisory Committee Stephen C Groft PharmD Director of the Office of Rare Diseases at

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The researchers described their work and Stephen C Groft PharmD Director of the Office of Rare Diseases at the National Institutes of Health described the activities of his office Fr Köhler is shown facing the camera under a photograph of her husband Abbey Meyers of NORD is at left

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View photos from the 2005 Tribute Banquet NORD honored four individuals and three companies for their achievements toward reducing the suffering of people with rare diseases at its 22nd annual Tribute Banquet on May 23 The

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News Briefs NORD Honors Innovators at 2007 Tribute Banquet A National Institutes of Health researcher two members of Congress the European Organization for Rare Disorders and four companies were honored at the 2007 NORD Tribute Banquet in

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February 25 and March 3 Program B

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Please Help US Raise Awareness Do you have a newsletter community bulletin board or other place where this ad might be placed to raise awareness of rare diseases and to encourage support for NORD s programs and

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