Danbury / San Francisco / Washington / DC / Brussels / Chicago / Washington DC / New York City / /
Company
Bausch & Lomb / NORD / Amicus / Rare Disease Day Partners / EURORDIS / Public Policy / Congenital Hyperinsulinism International / L. Saltonstall / /
Continent
America / Europe / /
Country
Spain / United States / /
Currency
USD / / /
Event
Business Partnership / FDA Phase / Person Communication and Meetings / /
Facility
Rayburn House Office Building / Robert Temple / FDA’s Center / / /
IndustryTerm
therapies for persons with rare disorders / online patient community / drug products / cancer treatment / online communities / investigational products / media inquiries / orphan products / social media / Therapies For Rare Diseases / human translation services / patient services / Treatment of Rare and Neglected Diseases / legislative solutions / media blitz / /
MedicalCondition
undiagnosed rare disease / multiple sclerosis / very rare and complex disorder / thoracic insufficiency syndrome / Tarlov Cysts / brutal and unkind disease / progressive supranuclear palsy / Adenoid Cystic Carcinoma / multiple system atrophy / rare disorders / diseases / Lowe syndrome / primary effusion lymphoma / disorders / pulmonary Kaposi sarcoma / I Have Paraneoplastic Syndrome / Langerhans cell histiocytosis / Select/Vet Candidate Diseases / neuromyelitis optica / rare syndrome / blindness / stiff person syndrome / disease / primary central nervous system lymphoma / pain / simple fatigue / prevalent diseases / syndrome / chronic and rare diseases / I Have Congenital Hyperinsulinism / Lewy body dementia / rare diseases / ALS/Parkinsonism dementia / breast cancer / malignant multiple sclerosis / Systemic Sclerosis / cancer / serious disease / broader rare disease / Waldenstrom macroglobulinemia / Angelman syndrome / multicentric Castleman disease / entire rare disease / muscular dystrophy / Diffuse Scleroderma / Cornelia de Lange syndrome / numbness / very rare disease / same syndrome / painful muscle spasms / Devic’s disease / paraneoplastic pemphigus / Cat Eye Syndrome / rare disease / congenital hyperinsulinism / Pseudomyxoma Peritonei / specific rare diseases / I Have Cornelia de Lange Syndrome / I Have Devic’s Disease / Primary Orthostatic Tremor / increasing numbness / /
MedicalTreatment
chemotherapy / /
Organization
Drug Information Association / FDA CDER / Energy and Commerce Committee / Senate / U.S. Congress / Duke University School of Medicine / University of Washington Social Security Commissioner Makes Surprise Announcement On / US Federal Reserve / FDA Office / FDA’s Center for Drug Evaluation and Research / Mario Batali Foundation Pediatric Rare Disease Research Fund / Republican Party / Brookings Institution / Food and Drug Administration / Histiocytosis Association of America / Major Success Establishes Research Fund / NIH office of Rare Diseases Research Tracks / Center for Biologics Evaluation and Research / Washington DC Office / PDUFA V / Medtronic Foundation / Mario Batali Foundation / Engelberg Center / office of New Drugs / House of Representatives / FDA’s office of Orphan Products Development / FDA’s Department of Planning & Informatics / Social Security Administration / Center for Devices and Radiological Health / FDA Center for Drug Evaluation / Connecticut Office / Friedreich’s Ataxia Research Alliance / National Institute of Health / Democratic Party / NORD Medical Advisory Committee / Center for Devices / United States Senate / Congress / House Committee on Energy and Commerce / MPN Research Foundation / Radiological Health / Mario Batali Foundation Establishes Research Fund / Commerce Committee / /
Person
Sandy Walsh / Ana Maria Vallarino / Leonard Lance / Gayatri Rao / Ann Brazeau / Timothy Coté / Mark McClellan / Thomas Fleming / Jeffrey Shuren / V. Dorman / Success Continued / Kari Luther Rosbeck / Kathleen Sebelius / Fred Upton / Frank Sasinowski / Mary Cobb / Stephen C. Groft / Janelle I Have Devic / Success Establishes / Joseph Crowley / Moderator Timothy Coté / Diane Dorman / Todd / Anne Pariser / Pamela Gavin / Francis Collins / Cornelia de Lange / Fred Hassan / Marc Walton / Gwyneth Paltrow / Janet Woodcock / John Crowley / Ronald J. Bartek / Catherine Collins / Ian I Have Langerhans Cell Histiocytosis / Mario Batali / Margaret Hamburg / Julie / Friedreich / Peter L. Saltonstall / Margaret Anderson / Robert / Michael Astrue / Theresa Mullin / Stefanie Putkowski / / /
Position
chef / restaurateur / and author / executive director / official U.S. website / VP Presents Invited Testimony / Vice President / constant advocate / Chairman and CEO / Executive Director / FasterCures development / Rare Disorders President / Director / NIH Center / Acting Director / CEO / Republican co-chair / Representative / Vice President of Communications Mary Orcutt Vice / SSA Commissioner / Health and Human Services Secretary / program coordinator / Board Chair / Chief Medical Officer / Commissioner / Vice President of Finance / Social Security Commissioner / Ambassadors / Vice President for Communications / Senior Vice President of Membership and Organizational Strategy / Vice President of Development Diane Dorman Vice President / Vice President of Membership and Organizational Strategy “Working / elementary school / medical advisors / actress / VP of Development / President and CEO / Major / President and Co-Founder / Director of Membership / Scientific Director / Director for Rare Diseases / Director for Translational Sciences / Director and Social Security Commissioner / Professor of Biostatistics / director of an organization / Deputy Center Director for Clinical Sciences / Director / co-chair / pediatrician / Chairman of the Board / General / NORD President and CEO / NORD Vice President / NORD Board Chair / /
News from Nord An update for our members and friends Fall[removed]Alone We Are