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News from Nord An update for our members and friends SUMMER[removed]NORD Hails FDA Safety
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Document Date: 2012-12-18 11:57:21


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Amgen / Tolerance Working Group / Rare Disease Day US / LAL Solace Liam’s Land Organization Inc. / Facebook / OT Resource / Pfizer Inc. / MitoAction MEBO Research Inc. / Alexion Pharmaceuticals Inc. / Acromegaly Community Inc. / Several Important Bills Were Incorporated / Genentech Inc. / Bray / Parent Project Muscular Dystrophy Short Bowel Syndrome Foundation Inc. / CBS News / Rare Disease Therapeutics Inc. / Wall Street Journal / ABC / NORD / Hemolytic Uremic Syndrome (aHUS) Amgen Inc. / Vertex Pharmaceuticals Inc. / FDA’s / Biogen Idec / Anascorp / Rare Disease Day Partners / FACMG / /

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Canada / United States / /

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USD / /

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EntertainmentAwardEvent

Foundation) One One-Year Award / /

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M&A / FDA Phase / Natural Disaster / /

Facility

Gene Profiling Facility Samuel Lunenfeld Research Institute Mount Sinai Hospital / FRACP Australian Neuromuscular Research Institute / FDA Center / Mount Sinai Hospital / University Health Network / Pediatric Pathology Loma Linda University / Toronto Western Hospital University of Toronto / University of Toronto Department / White Oak Campus of FDA / PitiéSalpêtrié Hospital / Union Station / Neurobiology University of Southern California Molecular Basis / Washington National Medical Center / Laboratory Medicine / /

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rare disease therapies / the abnormal ALK gene Rare Disease Therapeutics / online registration page / online version / programs and customized services / scientific tools / orphan products / patient services / PhD Rare Disease Therapeutics / Treatment of Primary Orthostatic Tremor Tarlov Cyst Disease / online platform / law / /

MedicalCondition

rare diseases / Urea Cycle Disorders / childhood cancers / rare pediatric disease / Cover disease / atypical Hemolytic Uremic Syndrome / such diseases / Cancer / diseases / disorders / entire rare disease / common disease / Primary Orthostatic Tremor Tarlov Cyst Disease / common diseases / rare pediatric diseases / cancers / disease / Cat Eye Syndrome / rare disease / specific rare diseases / chronic diseases / Primary Orthostatic Tremor / /

MedicalTreatment

counseling / /

Movie

Conflict of Interest / /

Organization

Washington DC Office / Inc. Myotonic Dystrophy Foundation National Brain Tumor Society NBIA Disorders Association NOMID Alliance Parent Project Muscular Dystrophy Short Bowel Syndrome Foundation / Drug Information Association / Tarlov Cyst Disease Foundation / FDA’s office of Orphan Products Development / PitiéSalpêtrié Hospital Paris / Loma Linda University / Senate / NIH Coalition of Patient Advocacy Groups / U.S. Congress / Urea Cycle Disorders Foundation / Laboratory for Advanced Molecular Diagnostics / Food Protein Entercolitis LAL Solace Liam’s Land Organization / Duke University School of Medicine / Center for Devices and Radiological Health / NORD’s RN / office of Special Health Issues / Assistant Professor Broad Center for Regenerative Medicine and Stem Cell Research / Research Project Portfolio Clinical Genomics Center / Genetic Alliance / University of Toronto Department of Laboratory Medicine and Pathobiology Toronto / RDCRN NORD / National Organization for Rare Disorders / Neurobiology University of Southern California Molecular Basis of Split Hand-Foot Malformations / FDA / Corporate Council / Biotechnology Industry Organization / Rare Disease Council / Connecticut Office / NIH FDA / Mount Sinai Hospital / Congressional Childhood Cancer Coalition / Massachusetts Biotechnology Council / National Institute of Health / Shwachman-Diamond Syndrome Foundation / Food and Drug Administration / Expanding and Promoting Expertise in Review of Rare Treatments / Gene Profiling Facility Samuel Lunenfeld Research Institute Mount Sinai Hospital Toronto / FDA Center for Drug Evaluation and Research / Energy & Commerce Committee / FDA’s CDER / Cell and Neurobiology University of Southern California Molecular Basis / Inc. Guthy Jackson Charitable Foundation International Association for Food Protein Entercolitis LAL Solace Liam / Senate HELP Committee / Congress / Inc. MitoAction MEBO Research / Washington National Medical Center / NORD Member Organization / Australian Neuromuscular Research Institute Perth / NIH office of Rare Diseases Research / HELP Committee / Cystic Fibrosis Foundation / NORD’s Medical Advisory Committee / FCCMG Clinical and Metabolic Geneticist Assistant Professor University Health Network/ Mount Sinai Hospital Toronto / Food Safety / House Energy & Commerce Committee / Center for Drug Evaluation and Research / NORD Corporate Council / Department of Cell / University of Toronto / Center for Biologics Evaluation and Research / /

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Anne Pariser / Richard Burr / Sheldon Whitehouse / Obama / Gayatri Rao / Mike Enzi / Henry Waxman / Kerby C. Oberg / ABBEY S. MEYERS / Patricia Richardson / Charles Bass / Aaron Goldman / Sarah MacDonald / Paul Kim / John Barrasso / Thomas Marino / Amy Klobuchar / Cliff Stearns / Michael McCaul / Kieran Murphy / Scott Brown / Michael Burgess / Jordan Lerner-Ellis / Blair Van Brunt / Fred Upton / Michael Bennet / Chantal Morel / Robert Casey / Margaret Hamburg / Marshall Summar / Al Franken / Julian Rodrigues / Tom Harkin / Sabine Meunier / Peter L. Saltonstall / Michael Scott / Kay Hagan / Johnny Isakson / Lamar Alexander / Brian Bilbray / Diana DeGette / Steven Grossman / Pamela Gavin / /

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President / Vice President for Communications / founding president / Online Physician / Deputy Chief / Chief / Actress / official / President and CEO / regulatory consultant / Representative / genetic counselor / Associate Professor / Director for Rare Diseases / Principal Investigator / policy leader and advocate / Board Chair / Senator / teacher / President add / Chairman / Hospital Director / International Medical Affairs / Director / Commissioner / Assistant Professor / Professor & Vice Chair / advocate for the rare disease community / patient/researcher / family Neurologist / Senior Researcher Movement Disorders Clinic / Director / International Medical Affairs / NORD President and CEO / /

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DC / /

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New York / Connecticut / Ontario / Maryland / /

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the ABC and CBS News / Cancer Research / /

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Southern California / Western Australia / /

SportsLeague

International Association / /

TVShow

The West Wing / Home Improvement / Strong Medicine / /

Technology

Clinical Genomics / Medical Imaging / Biotechnology / drug development / Regenerative Medicine / /

URL

www.nordphysicianguides.org / www.rarediseases.org/patient-orgs/current / www.rarediseaseday.us / www.rarediseases.org / www.rarediseases.org/news-events/news/nord-dia-2012 / /

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