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NEWS FROM NORD AN UPDATE FOR OUR MEMBERS AND FRIENDS FALL[removed]I AM 1 IN 10
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Document Date: 2012-12-18 11:57:21

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File Size: 1,74 MB

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City

San Francisco / WASHINGTON / New York City / Washington / DC / /

Company

Siren Interactive / Hoover / HEARINGS COMPASSIONATE ALLOWANCES SPOTLIGHT RARE DISEASES NORD / Twitter / Facebook / the Washington Post / ABC News / NORD / Perkin Elmer / Social Security / Compassionate Allowances / /

Country

Wales / /

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Event

Person Communication and Meetings / Person Travel / Business Partnership / /

Facility

Children’s Hospital of Philadelphia / Hoover Dam / American College of Medical Genetics / /

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IndustryTerm

a proposed rare disease therapy / rare disease therapies / social media presence / online environments / patients network / orphan products / food / treatment for a rare disease / social media / therapies for rare disorders / car washes / basic tools / online patient communities / patient services / medical food production / dietary management / chemical side / food treatment / orthopedic devices / /

MedicalCondition

rare diseases / primary progressive multiple sclerosis / viral infection / benign bone tumors / hereditary motor / disorder / cardiovascular diseases / cryopyrin-associated periodic syndromes / thoracic insufficiency syndrome / rare congenital heart defects / HMSN / fever / grand mal seizure / seizure / rare disorders / diseases / epilepsy / certain metabolic diseases / depression / disorders / loss of consciousness / rare neurological disorder / Moebius syndrome / muscle weakness / additional diseases / syncope / MS / autoimmune diseases / rare pediatric diseases / cancers / additional rare diseases / specific diseases / disease / multiple hereditary exostoses / rare disease / progressive disease / pain / specific rare diseases / each disease / lightheadedness / syndrome / /

MedicalTreatment

surgery / orthopedic surgery / occupational therapy / surgeries / /

NaturalFeature

FOR OUR waterfall / OUR waterfall / UPDATE waterfall / UPDATE FOR waterfall / UPDATE FOR OUR waterfall / AN UPDATE FOR OUR waterfall / OUR MEMBERS waterfall / FOR waterfall / FRIENDS waterfall / UPDATE FOR OUR MEMBERS waterfall / AN UPDATE FOR OUR MEMBERS waterfall / AN UPDATE FOR waterfall / AN waterfall / FROM waterfall / MEMBERS waterfall / FOR OUR MEMBERS waterfall / AN UPDATE waterfall / /

Organization

Washington DC Office / NIH Genetic and Rare Diseases Information Center / MHE Coalition / Caucus / Medicare / Social Security Administration / European Organization for Rare Diseases / U.S. Congress / US Federal Reserve / National Organization for Rare Disorders / the American College / FDA / Connecticut Office / NORD TELLS SENATE / Children’s Hospital of Philadelphia / National Institute of Health / Food and Drug Administration / Institute of Medicine / United States Senate / Congress / RN NORD / Information Service / U.S. House of Representatives / NORD Development Office / Hereditary Neuropathy Foundation / NORD’s Medical Advisory Committee / Moebius Syndrome Foundation / STARS / /

Person

JASON BARRON / Debbie Wasserman Schultz / Dan Aziere / Annette / Stephen / Nancy Schoenberg / Caroline / Pat Welton / Tai Spargo / Paige Bourhill / Robert M. Campbell / Frank J. Sasinowski / Phil Gingrey / Frank Pallone / Bernadette Scarduzio / Dave / BRYN WELTON / Martha Bryce / Brian Drexler / Marsha Lanes / Diane Dorman / Michael Astrue / /

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Position

TREATMENTS An advocate / President / Director of Compassionate Allowances and Disability Outreach / Vice President for Communications / vice president for public policy / Special Projects Coordinator / national spokesperson / orthopedic surgeon / insurance claims adjuster / speaker / researcher / Special Olympics athlete / genetic counselor and a registered nurse / Medical Advisor / DIRECTOR OF PUBLIC POLICY Researching / counselor / chairman / Commissioner / Nurse / pediatrician / reporter / member / /

ProgrammingLanguage

DC / /

ProvinceOrState

Connecticut / /

PublishedMedium

the Washington Post / /

SportsEvent

Olympics / /

Technology

Biotechnology / DRUG DEVELOPMENT / /

URL

www.rarediseaseday.us / www.rarediseasecommunities.org / www.rarediseases.org / www.ssa.gov/compassionate / /

SocialTag