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Lipid storage disorders / Neurodegenerative disorders / Niemann–Pick disease / NPC1 / Niemann-Pick disease / type C / Lysosomal storage disease / Tay–Sachs disease / National Institutes of Health / Genetic Alliance UK / Health / Rare diseases / Medicine


Autumn[removed]Volume 19 No 2 CONTENTS Chairman’s Chat
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Document Date: 2013-06-25 13:27:20

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File Size: 2,67 MB

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City

Mount Sinai / Oxford / Manchester / Concord / Birmingham / Cardiff / /

Company

Sanofi Company / Monmouth Dora Bryan OBE Rt. / Cancer Research UK / Adolescent Neurology / Centre Central Manchester University Hospitals NHS Foundation Trust / The Niemann-Pick Disease Group / Wellcome Trust / INPDA / Genzyme Corporation / Birmingham University Hospitals Trust / Actelion / HP / David Roberts Niemann-Pick Disease Group / Rare Disease Uk / Inherited Metabolic Disorders / /

Continent

Europe / /

Country

Macedonia / Thailand / France / United Kingdom / Scotland / Wales / Chile / Poland / United States / /

Currency

GBP / USD / EUR / /

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Event

Business Partnership / FDA Phase / /

Facility

Enschede Polytechnic University / Memorial Award Winning Submission / Cardiff University / Salford Royal NHS Trust Hospital / University of Notre Dame’s Institutional Review Board / Laboratory Engineering / National Institute of Health Research / University of Notre Dame / National Institute of Health / the Netherlands Cancer Institute / Hospital Oxford Road / University of Oxford / University Hospitals / Memorial Award / Neglected Diseases University of Notre Dame’s Center / /

IndustryTerm

protein product / therapies for ultra rare diseases / trial protocol / sugary solution / e-newsletter / gene products / prevention of the diseases / pharmaceutical / social services / patient advocacy groups / health food stores / Therapeutics for Rare and Neglected Diseases / /

MedicalCondition

another lysosomal storage disorder / rare diseases / cruel and devastating disease / lysosomal storage disorders / final rare disease / weekly rare disease / MPS disorders / glycolipid storage diseases / disorder / Niemann-Pick diseases / Neurometabolic Diseases Information Network / irreversible neurologic disease / cancer / Tay-Sachs disease / Niemann Pick Disease / Gaucher disease / Uk rare disease / Fabry disease / diseases / ultra rare diseases / NPC1 Disease / lysosomal diseases / age-adjusted disease / bloating / analogous disorders / Pompe disease / Inherited Metabolic Disorders / NPC disease / disease / NiemannPick disease / rare disease / Niemann-Pick disease / multi-system rare diseases / rare and neglected diseases / /

MedicalTreatment

enzyme replacement therapy / /

NaturalFeature

Sinai / /

Organization

Salford Royal NHS Trust Hospital / University of Notre Dame’s Center for Rare / Dept of Health / Vermont House / Genetic Medicine Manchester Academic Health Science Centre Central Manchester University Hospitals NHS Foundation Trust / elizabethnpdg@aol.co.uk Laura Bell Clinical Nurse Specialist Department of Metabolic Medicine Salford Royal Foundation NHS Trust Stott Lane / University of Oxford / Niemann-Pick Research Foundation / NICHD Institutional Review Board / University of Notre Dame’s Institutional Review Board / Ara Parseghian Medial Research Foundation / Institute of Health Research / European Commission / the Netherlands Cancer Institute in Amsterdam / FDA / Management Committee / European Union / Department of Health / NHS / Division of Child and Adolescent Neurology Departments of Neurology / Pediatrics and Medical Genetics Mayo Clinic Children / Award Committee / Office for Rare Diseases / National Institute of Health / University of Notre Dame’s Center for Rare and Neglected Diseases / Cardiff University / Neurology / Pediatrics and Medical Genetics Mayo Clinic Children's Center / Welsh Assembly / CONTENTS / Department of Pharmacology / Medical Research Council / EC DG Research Directorate / Enschede Polytechnic University in the Netherlands / Centre for Rare / Scottish Parliament / Central Office / Board of Trustees / Brain Foundation / University of Notre Dame / Neglected Diseases / /

Person

Toni Mathieson / Janice Brooks / Sue Lowe / Marc C Patterson / Richard Rogerson Jim Green / Tarek Hiwot / Marc Patterson / Jackie Imrie / Guy Johnston Nicholas Mathias / Denny Porter / Simon Jones / Denise Nolan Keith Andrews / Danielle Taylor / Martin Rossor / Susan Green / Bassam / Stephen Nutt / Emyr Lloyd-Evans / Marisa Tong / Toni / Peter Pentchev / Washington Tyne / Roscoe Brady / Bill Owen / Laura Bell / Dominic Walker / Fran Platt / Helen Carter / Peter Carlton Jones / Andreas Brecht / Richard Brooks / Elizabeth Davenport / David Roberts / /

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Position

Executive Officer / care coordinators/care advisors / Executive Director / physician / Rt / Information Officer / Professor / named care coordinator / Treasurer / Major / Independent Nurse Consultant / Director Email / Program Coordinator / Consultant / Medical Advisor / Research Assistant / OGS Bishop / research assistant in a group / Chairman / Chairman / the Medical Advisor / the Research / Coordinator / Clinical Nurse Specialist / Nurse / research technician in a group / care coordinator / Porter / Families Officer / d.robertsinruncorn@ntl.world.com Treasurer / /

Product

Zavesca / NPC1 / Cyclodextrin / /

ProgrammingLanguage

EC / /

ProvinceOrState

Indiana / New York / Vermont / Maryland / /

PublishedMedium

Niemann-Pick News / /

RadioStation

CBE / /

Technology

mobile phones / genotype / transplantation / trial protocol / DNA sequencing / /

URL

http /

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