A sample of attendees from the last two years…

TITLE COMPANY VP Value & Access Ipsen Biopharmaceuticals Inc VP US Commercial Raptor Pharmaceuticals VP Specialty Sales ASD Healthcare VP Software Engineering Digital Infuzion Inc VP Scientific Affairs Fibrocell Science Inc VP Scientific & Regulatory Strategy & Ops Cato Research VP Scientific & Regulatory Strategy & Ops Cato Research VP Scientific & Regulatory Affairs PhRMA VP Sales BDI Pharma Inc VP Regulatory Affairs Cote Orphan LLC VP Regulatory Affairs Horizon Pharma VP Regulatory Affairs Amicus Therapeutics Inc VP Regulatory Affairs ImmunoGen Inc VP Regulatory & Quality Stealth BioTherapeutics VP Regulatory & Quality Stealth BioTherapeutics VP Public Policy NORD VP Public Policy Immune Deficiency Foundation VP Programs & Education CurePSP Foundation for PSP VP President Patient Svcs National Organization for Rare Disorders VP Pharma Technology & Innovation Codexis VP Payer Insights and Access Pfizer Inc VP Patient Relations & Medical Affairs Pulmonary Fibrosis Foundation VP Patient Engagement Aegerion Pharmaceuticals VP Patient Engagement Aegerion Pharmaceuticals VP Patient Advocacy Catalyst Pharmaceuticals VP Patient & Market Acess Aegerion Pharmaceuticals VP Ops & Patient Access Sobi Inc VP Ops & Corp Partnerships The Sturge Weber Foundation VP Ops Agilis Biotherapeutics LLC VP Ops Agilis Biotherapeutics LLC VP Mktg & Bus Dev Digital Infuzion Inc VP Mktg & Bus Dev Digital Infuzion Inc VP Medical Affairs Jazz Pharmaceuticals VP Medical Intellia Therapeutics VP Marketing Orphan Bus Unit Horizon Pharma VP Manufacturer Relations BDI Pharma VP Managed Markets Zogenix VP Information Technology National Organization for Rare Disorders VP Information Technology National Organization for Rare Disorders VP Industry Relations Cardinal Health VP Health Outcomes Walgreens VP Health Outcomes Walgreen Co VP Health IT Strategy & Biomedical Consulting Digital Infuzion Inc VP Group Editor Neurology Reviews Frontline Medical Communications Inc VP Group Editor Neurology Reviews Frontline Medical Communications Inc VP Govt Relations Genzyme a Sanofi Company VP Govt Affairs & Public Policy Vertex VP Govt Affairs & Public Policy Vertex VP Govt Affairs & Advocacy BioMarin VP Govt Affairs & Advocacy BioMarin VP Global Mktg, Ops & Training Aegerion Pharmaceuticals VP Global Health Policy & Govt Affairs Sarepta Therapeutics VP Global Health Policy & Govt Affairs Sarepta Therapeutics VP Global Clinical Science Horizon Pharma VP Genetic Services Patient Crossroads VP Genetic Services Patient Crossroads VP Epidemiology Evidera VP Endo Onco Sales & Marketing Ipsen Biopharmaceuticals Inc VP Educational Initiatives National Organization for Rare Disorders VP Educational Initiatives National Organization for Rare Disorders VP Development American Multiple Endocrine Neoplasia Support VP Dev & Mktg Variant Pharmaceuticals VP Dev AMEN Support VP Corporate Dev Variant Pharmaceuticals VP Corp Dev REGENXBIO Inc VP Corp Affairs Jazz Pharmaceuticals VP Compliance Dohmen Life Science Services VP Communications Ipsen Biopharmaceuticals Inc VP Commercial Strategy & Advocacy Aegerion Pharmaceuticals VP Commercial Ops Recordati Rare Diseases Inc VP Commercial Operations Corcept Therapeutics VP Commercial Dev Rare Disease Pfizer VP Commercial & Portfolio Planning REGENXBIO Inc VP Comm Svcs Ops UBC VP Clinical Dev Dyax Corp VP Chemistry, Medicinal Chemistry Nektar Therapeutics VP Bus Ops AveXis Inc VP Bus Dev Dohmen Life Science Services VP Bus Dev FFF Enterprises VP Bus Dev Omnicare Specialty Care Group VP Bus Dev UBC / Accredo VP Bus Dev Cote Orphan LLC VP Bus Dev Express Scripts VP Bus Dev Patagonia Pharmaceuticals LLC VP Bus Dev Retrophin VP Advocacy & Outreach Cluster Headache Support Group Inc VP Access Solutions Omnicare Specialty Care Group VP Access Solutions Omnicare Specialty Care Group VP & Partner Pennside Partners Ltd VP & GM Cystic Fibrosis Svcs a Walgreens Alliance VP & Chief Commercial Officer XOMA Corporation VP A Cure In Sight VP Big Duck VP Cardinal Health Specialty Solutions VP RASopathies Network USA VP Rare Disease Report VP Avalere Health VP Caring Voice Coalition Inc VP Lynch Syndrome International VP Rare Disease Report VP Xcenda Vice Chair Board Directors Alpha 1 Foundation V PPRN Patient Partner Vasculitis Foundation US Marketing Aegerion Pharmaceuticals US Liaison Chinese Organization for Rare Disorders CORD Treasurer Alveolar Capillary Dysplasia Assoc TA Head AbbVie SVP Specialty Pharmacy Aureus Health Services SVP Regulatory & Compliance Cytokinetics SVP Regulatory & Compliance Cytokinetics SVP Rare Disease Dohmen Life Science Services SVP Legislation & Public Policy Parent Project Muscular Dystrophy SVP Global Head Site & Patient Networks Quintiles SVP Global Commercial Officer Pfizer SVP Dev & Medical CMO Swedish Orphan Biovitrum AB SVP Community Engagement Parent Project Muscular Dystrophy SVP Community Engagement Parent Project Muscular Dystrophy SVP Communications & Administration Parent Project Muscular Dystrophy SVP Immune Deficiency Foundation SVP JPA Health Communications SVP Spectrum PRF Student University of Connecticut Strategic Planning Committee Neurofibromatosis Network Strategic Advisor eMgine HealthLogics Staff Scientist Selecta Biosciences Sr Writer Pink Sheet Sr VP Technology Assessment and QA Nektar Therapeutics Sr VP Science Policy BIO Sr VP Regulatory Dyax Sr VP Public Affairs CSL Behring Sr VP Public Affairs CSL Behring Sr VP Medical & Scientific Affairs National Organization for Rare Disorders Sr VP Legislation & Public Policy Parent Project Muscular Dystrophy Sr VP Global Head Rare Diseases Genzyme Sr VP Global Bus Ops & External Affairs Horizon Pharma Sr VP Commerical Operations Lash Group Sr VP Commercial Sales Aureus Health Services Sr VP Scheer & Company Inc Sr Scientific Liaison DIA Americas Sr Research Leader Outcomes Research Evidera Sr Research Analyst Public Policy & Govt Aff Biogen Sr Regulatory Health Project Mgr Food And Drug Administration Sr Regulatory Health Project Mgr FDA Sr Regulatory Health Project Mgr FDA Sr Regulatory Group Dir Genentech Sr Regulatory Group Dir Genentech Sr Project Specialist HVMC Cincinnati Childrens Hospital Medical Ctr Sr Project Specialist HVMC Cincinnati Childrens Hospital Medical Ctr Sr Project Mgr/Drug Dev Team Lead NIH NCATS Sr Project Mgr/Drug Dev Team Lead NIH NCATS Sr Program & Policy Analyst National Institutes of Health Sr Program & Policy Analyst National Institutes of Health Sr Partner Deerfield Mgmt Sr Mgr Research & Programs CureSearch Children's Cancer Sr Mgr Operations Lash Group Sr Mgr New Rare Disease Treatments Genzyme Sr Mgr Govt Affairs & Market Access Genzyme Sr Mgr Community Relations Sarepta Therapeutics Inc Sr Mgr Commercial & Forecasting Grunenthal USA Sr Mgr ASrid Sr Mgr Biogen Sr Medical Policy Analyst FDA Ofc of Good Clinical Practice Sr Medical Officer FDA Sr Med Dir Rare Diseases Genentech Sr Marketing Mgr Baxalta Sr Health Scientist Administrator ORDR NCATS National Institutes of Health Sr Financial Case Mgr ViroPharma Charitable Foundation Sr Field Reimbursement Mgr Valeant Pharmaceuticals Sr Event Mgr EURORDIS Sr Editor Pharmaceutical Executive Sr Editor Pharmaceutical Executive Sr Dir, Alliance, Advocacy & Policy Relations Jazz Pharmaceuticals Sr Dir, Alliance, Advocacy & Policy Relations Jazz Pharmaceuticals Sr Dir Technology Dev North Carolina Biotech Center Sr Dir Research & Health Aplastic Anemia & MDS Intl Foundation Sr Dir Regulatory Policy & Intelligence Shire Sr Dir Regulatory Policy Everylife Foundation for Rare Diseases Sr Dir Regulatory Affairs Horizon Pharma Sr Dir Regulatory Affairs Shire Sr Dir Regulatory Affairs Horizon Pharma Sr Dir Regulatory Affairs Shire Sr Dir Regulatory & Quality GlycoMimetics Sr Dir Regulatory & Quality GlycoMimetics Sr Dir Regulatory & Clinical Outcomes Stealth BioTherapeutics Sr Dir Rare Disorder Walgreens Co Sr Dir Programs & Research Foundation Ichthyosis & Related Skin Types Sr Dir Pipeline Marketing Genentech Sr Dir Patient Engagement & Communications EveryLife Foundation for Rare Disease Sr Dir Patient & Physician Services UBC an Express Scripts Co Sr Dir New Product Strategy & Dev Blueprint Medicines Sr Dir New Opportunities Nektar Therapeutics Sr Dir Natl Alliance Dev Pfizer Sr Dir Multichannel Marketing Solutions Frontline Medical Communications Inc Sr Dir Mkt Access Aegerion Pharmaceuticals Sr Dir Mkt Access Aegerion Pharmaceuticals Sr Dir Medical Scientific Liaisons Aegerion Pharmaceuticals Sr Dir Med Affairs Cytokinetics Sr Dir Health Outcomes Walgreens Sr Dir Govt Affairs & Public Policy Vertex Sr Dir Govt Affairs & Public Policy Vertex Sr Dir Govt & Public Affairs Horizon Pharma Sr Dir Govt & Public Affairs Horizon Pharma Sr Dir Extenal Study Mgmt Celerion Sr Dir ERDI Pfizer Sr Dir Div Marketing AmerisourceBergen Sr Dir Communications PhRMA Sr Dir Commercial Analytics Zogenix Sr Dir Bus Dev Premier Research Sr Dir Advocacy & Awareness Pulmonary Hypertension Association Sr Dir Advocacy & Awareness Pulmonary Hypertension Association Sr Dir BioMarin Sr Dir Blueprint Medicines Sr Dir Sanofi Genzyme BioVentures Sr Dir Takeda Oncology Sr Dir Vital Therapies Inc Sr Dir Xcenda a Part of AmerisourceBergen Sr Dir AbbVie Sr Dir Prosensa Sr Dir Vital Therapies Inc Sr Clinical Study Mgr Takeda Dev Ctr Americas Inc Sr Bus Dev Dir Quintiles Sr Bus Dev Dir Quintiles Sr Bus Analyst Therapure Biopharma Inc Sr Assoc Mark Krueger & Associates Sr Assoc HealthCare Royalty Partners Sr Analyst US Government Accountability Office Sr Advisor to the Dir US Food & Drug Admin Sr Advisor APBD Research Foundation Sr Advisor BioMarin Pharmaceutical Inc Spokesperson Friedreichs Ataxia Research Alliance Software Engineer National Organization for Rare Disorders Social Media Counselor Sam Brown Healthcare Communicationss Social Insurance Specialist Social Security Administration Secretary Treasurer CCHS Network Secretary The Morgan Leary Vaughan Fund Inc Secretary The Morgan Leary Vaughan Fund Inc Scientist Moderna Therapeutics Scientific Program Dir Muscular Dystrophy Association Scientific Liaison for Sarcoma FDA CDER OND OHOP DOP2 Scientific Dir Pachyonychia Congenita Project Scientific Advocacy Janssen Scientific Affairs LLC Science Writer DNA Science Blog Science Coordinator A T Childrens Project RN AMENSupport Reviewer FDA Reviewer FDA Researcher Korea NIH Research Scientist III Alexion Pharmaceuticals Research Nurse III Cincinnati Childrens Hospital Medical Center Research Assistant Arkansas State University Research Assistant Arkansas State University Research & Development Lysosomal & Rare Disorders Rsrch & Trtmt Ctr Research & Development Lysosomal & Rare Disorders Rsrch & Trtmt Ctr Research & Dev Retrophin Reporter Columbia University Reimbursement & Advocacy Sr Mgr Baxter Regulatory Scientist Food And Drug Administration Regulatory Review Officer Food & Drug Admin Regulatory Research Staff FDA Regulatory Program Dir Genentech Regulatory Intelligence Genzyme a Sanofi Company Regulatory Counsel Food & Drug Admin Regulatory Affairs Cytonet GmbH & Co KG Regulatory Advisor Purdue University Registry Coordinator Board Member PSC Partners Seeking a Cure Registry Coordinator PSC Partners Seeking A Cure RDCF Mgr Rare Disease Charitable Foundation RDCF Mgr Rare Disease Charitable Foundation Rare Diseases Program FDA CDER OND Rare Disease Program FDA Publisher Neurology Reviews Frontline Medical Communications Inc Publisher Neurology Reviews Frontline Medical Communications Inc Public Policy Liaison Amyloidosis Support Groups Project Ops Mgmt Bus Partner Sanofi Project Mgr NBSTRN American College of Medical Genetic/Genomics Project Mgr ResearchMatch Project Mgr bluebird bio Inc Project Leader F Hoffmann La Roche Project Coordinator NCC American College of Medical Genetic/Genomics Project Coordinator NBSTRM American College of Medical Genetic/Genomics Project Coordinator Batten Disease Support & Research Assoc BDSRA Program Team Leader Prothena Biosciences Inc Program Svcs Dir OI Foundation Program Officer National Institutes of Health Program Officer National Institutes of Health Program Mgr AlphaNet Program Mgmt Officer Food & Drug Administration Program Dir Neurogenetics Cluster National Institutes of Health Program Asst Office Rare Diseases Research NIH Program Assoc PCORI Program Assoc PCORI Program Administration Mgr Alpha 1 Foundation Professor Emeritus Neurology BioPontis Alliance for Rare Diseases Professor Chemistry Purdue University Professor Beaumont Hospital Prof Pharmaceutical Health Svcs Research Univ Maryland School of Pharmacy Product Mgr Accredo Product Mgr Lash Group a part of AmerisourceBergen Product Lead EoE Sr Dir Shire Principal Scientist Beyond Batten Disease Foundation Principal Scientist Beyond Batten Disease Foundation Principal Med Comm Scientist Genentech Principal Managing Dir Patient Experience Project Principal Managing Dir Patient Experience Project Principal Health Economist Genentech Principal Fellow Polymer Chemistry Nektar Therapeutics Principal Fellow Polymer Chemistry Nektar Therapeutics Principal Assoc Regulatory Affairs Genzyme A Sanofi Company Principal & Managing Dir Patient Experience Project Principal & CEO Cote Orphan LLC Principal & CEO Cote Orphan LLC Principal CJ Jones Strategy & Communications Principal GCC Partners Principal PWR Press FDA Week Press Freelance Press Medscape Press RPM Report Press Scrip Intelligence Press Medscape President Regulatory Services & Healthcare APCO Worldwide Inc President Regulatory Services & Healthcare APCO Worldwide Inc President Founder A Twist of Fate ATS President Exec Dir Jett Foundation President Exec Dir Tarlov Cyst Disease Foundation President Exec Dir Jett Foundation President Exec Dir Progeria Research Foundation President Exec Dir Tarlov Cyst Disease Foundation President Dir & Co Founder Friedreichs Ataxia Research Alliance President Custom Programs Frontline Medical Communications Inc President Custom Programs Frontline Medical Communications Inc President Consulting Services AmerisourceBergen Specialty Group President CEO CurePSP Foundation for PSP President Board Dir National MPS Society President Board Dir National MPS Society President & Professor Keck Graduate Institute President & Dir Friedrichs Ataxia Research Alliance President & COO Cytonet GmbH & Co KG President & CEO Canadian Organization for Rare Disorders President & CEO CareMetx LLC President & CEO Connexion Healthcare President & CEO Indian Organization for Rare Diseases I-ORD President & CEO National Organization for Rare Disorder NORD President & CEO ArmaGen Technologies Inc President & CEO BIO President & CEO Indian Organization for Rare Diseases I-ORD President & CEO National Organization for Rare Disorder NORD President & CEO Pulmonary Hypertension Association President - Board Dir XLH Network Inc President - Board Dir XLH Network Inc President Alport Syndrome Foundation President Amyloidosis Research Consortium President Betterpath President CMTC OVM President Center Point Clinical Services President Connect 4 Strategies President Curing Retial Blindness Foundation President Health & Wellness Partners President Hereditary Angioedema Association (HAE) President Lymphangiomatosis & Gorhams Disease Alliance President MWelborn Group President Mark Krueger & Associates Inc President Natl Gaucher Foundation of Canada President Red Arrow Labs President Sobi Inc President Taylors Tale President United Leukodystrophy Foundation President APS Type 1 Foundation President Alport Syndrome Foundation President American Behcets Disease Association President Caring Voice Coalition Inc President Check Orphan President Childrens PKU Network President Hereditary Angioedema Association (HAE) President Herspiegel Consulting President Histiocytosis Association President M CM Network President Mark Krueger & Associates Inc President Natl Gaucher Foundation of Canada President Phelan McDermid Syndrome Foundation President Rare Disease Report President Sheer & Co Inc President Spastic Paraplegia Foundation President Taylors Tale President United Leukodystrophy Foundation Prader Willi Syndrome Administrator Latham Centers Postdoctoral Fellow Univ Maryland Baltimore Portfolio/Decision Analysis Pfizer Inc Policy Advisor FDA Policy & Advocacy Assoc Muscular Dystrophy Association (MDA) Pilot Coord Patient AirLift Services PhD Candidate Univ Maryland Baltimore Pharmacologist Food And Drug Administration Pharmacologist Food & Drug Administration Pharmacist Reviewer FDA Pharmaceutical Practice Leader Xerox Commercial Healthcare Pharma Drug Dev Consultant HBA Pediatric Hematologist Tulane University School of Medicine Pediatric CoChair The Mastocytosis Society Inc Patient Svcs Dir National Ataxia Foundation Patient Services Coord Intl Pemphigus & Pemphigoid Foundation Patient Outreach Mgr Horizon Pharma Patient Liaison Program Dir FDA Patient Liaison Program Dir FDA Patient Advocate Grunenthal USA Patient Advocacy Mgr Isis Pharmaceuticals Inc Patient Advocacy Liaison PTC Therapeutics Inc Patient Advocacy Aeglea Biotherapeutics Patient Advocacy Genzyme a Sanofi Company Patient Adv Dir Rare Disease Research Unit Pfizer Patient & Patient Advocate with UMDF United Mitochondrial Disease Foundation Patient Independent Patient United Mitochondrial Disease Foundation Patient HypoPARAthyroidism Partner Atlas Ventures Parent & Organic Acidemia Advocacy Liaison Isovaleric Acidemia Parent PSC Partners Seeking a Cure Parent PSC Partners Seeking a Cure Outreach Coord Patient AirLift Services Outreach & Events Coordinator The LAM Foundation Operations Research Analyst FDA Office Translational Sciences CDER FDA Office Dir Office Program & Strategic Analys FDA Nurse Practitioner Phoenix Childrens Hospital New Product Commercialization Biogen Idec Natl Dir Research NephCure Foundation Natl Account Mgr Walgreens Co MSL Ipsen Biopharmaceuticals Mktg & Communications Dir The Life Raft Group Mgr Scientific & Govt Affairs Sarcoma Foundation of America Mgr Science & Regulatory Affairs Biotechnology Industry Organization BIO Mgr Reimbursement & Health Policy BIO Mgr Regulatory Strategy Lundbeck Mgr Registries UBC Pharma Mgr Public Society Novo Nordisk Mgr Patient Advocacy Diplomat Mgr Financial Analysis Tekmira Pharmaceuticals Mgr Communications & Alliance Dev Everylife Foundation for Rare Diseases Mgr Commercial & Portfolio Planning REGENXBIO Mgr Clinical Ops Alnylam Pharmaceuticals Mgr ISPOR Mgr Xcenda Mgmt Assoc SMA Foundation Medical Officer Food And Drug Administration Medical Officer Food Drug Administration Medical Officer FDA Medical Officer FDA Medical Officer FDA Medical Officer FDA Medical Officer FDA Medical Officer FDA Medical Officer FDA Medical Officer Food & Drug Admin Medical Officer Food & Drug Admin Medical Officer Food & Drug Admin Center For Drugs Medical Officer Food & Drug Administration Medical Officer Food And Drug Administration Medical Information Assoc Genzyme Medical Information Assoc Genzyme Medical Geneticist Invitae Medical Dir General Pediatrics Childrens Hospital Greenville Health System Medical Dir Intellia Therapeutics Medical Anthropologist TNCC Mechanical Engineer US FDA CDRH/OSEL US Public Health Service Marketing Dir Horizon Pharma Marketing Consultant Healthcare Businesswomens Assoc Marketing Communications Mgr Amyloidosis Foundation Marketing & Advocacy Recordati Rare Diseases Inc Marketing & Advocacy Recordati Rare Diseases Inc Managing Partner RareD Consulting Managing Member Casdin Capital LLC Managing Editor Pink Sheet Managing Dir Healthcare Investment Banking JP Morgan Managing Dir Atheneos Capital Managing Dir Clarus Ventures LLC Managing Dir Centron Managing Dir Orphan Reach USA LLC Legal Counsel National Organization for Rare Disorders Lead Pharmacologist Food & Drug Administration Lab Technician Lysosomal & Rare Disorders Rsrch & Trtmt Ctr Jr Assoc Mark Krueger & Associates Integrated Product Dev Assoc Rho Information & Resource Mgr Muscular Dystrophy Assoc of New Zealand Inc Huntingtons Disease Advocate Independent HealthStar PR Ipsen Biopharmaceuticals Inc Healthcare Initiatives Advocate Turner Syndrome Foundation Inc Health Science Administrator FDA Health Science Administrator Food & Drug Administration Health Programs Coordinator FDA Health Policy & Planning Mgr Sarepta Therapeutics Health Consultant International WAGR Syndrome Association Health Communications Specialist FDA Head US Pompe Genzyme A Sanofi Company Head Strategy & Bus Dev Genzyme Corp Head Risk Mgnt & Strategy Shire Head Regulatory Affairs & Compliance NA Grunenthal USA Inc Head Regulatory Affairs Prothena Biosciences Inc Head Reg Strategy Rare Disease Shire International GmbH Head Rare Diseases F Hoffmann La Roche Ltd Head RA Pharma Alcon Head R&D HemoShear Therapeutics Head Ops Roche Head Global Patient Advocacy PTC Therapeutics Inc Head Dev Affairs & Ops Prothena Biosciences Inc Head Clinical Dev Policy Novartis Pharmaceuticals Corp Group Mgr Advocacy Baxalta Group Licensing Mgr Recordati Spa Group Acct Dir Rare Disease Ctr Excellence Connexion Healthcare Grants Program Dir Foundation for Prader Willi Research Govt Affairs Genentech Global Regulatory Team Lead Bristol Myers Squibb Global Head Patient Advocacy NPS Pharmaceuticals Global Head Medical Advocacy Insmed Global Head Medical Advocacy Insmed Incorporated Global Dev Team Leader Alexion Pharmaceuticals Inc Global Bus Dev Dir Clinigen Group Global Biometric Sciences Bristol Myers Squibb General Partner NEA General Counsel & VP Advocacy REGENXBIO Inc Gen Mgr Life Sciences Americas Terrapinn Inc Gen Counsel Snyder Robinson Foundation Fundraising Chair Board Member Dup15q Alliance Founder President ECD Global Alliance Founder CEO Hereditary Neuropathy Foundation Founder & President LORA Group LLC Founder & President Parent Project Muscular Dystrophy Founder & Exec Dir Kids v Cancer Organization Founder & CEO Hermansky Pudlak Syndrome inc Founder & CEO Hermansky Pudlak Syndrome inc Founder & CEO Siren Interactive Founder Jett Foundation Foundation President PTEN Hamartoma Tumor Syndrome Foundation Foundation Board Member & Secretary APBD Research Foundation Financial Case Mgr Rare Disease Charitable Foundation Financial Case Mgr Rare Disease Charitable Foundation Fellow Research Biology Nektar Therapeutics Fellow Emory University Federal Policy Mgr Cystic Fibrosis Foundation Exec VP Policy Access & Value Vertex Pharmaceuticals Inc Exec VP Drug & Biological Drug Products Greenleaf Health Exec Territory Sales Cardinal Health Exec Dir Translational Medicine Regeneron Pharmaceuticals Inc Exec Dir Strategic Partnerships The Right Step Foundation Exec Dir Sr GPRD Novartis Pharmaceuticals Corp Exec Dir Product Strategy Achillion Pharmaceuticals Exec Dir Medical Innovation Grunenthal USA Inc Exec Dir Market Access & Patient Svcs BioMarin Pharmaceutical Inc Exec Dir Govt Affairs Horizon Pharma Exec Dir CBI & Program Dir NEWDIGS MIT Center For Biomedical Innovation Exec Dir Advocacy & Policy Akcea Therapeutics Exec Dir Exec Dir ACMG Exec Dir Alpha 1 Foundation Exec Dir American Behcets Disease Association Exec Dir Bench International Exec Dir Bristol Myers Squibb Exec Dir Cholangiocarcinoma Foundation Exec Dir Congenital Hyperinsulinism International Exec Dir Cure HHT Exec Dir Fibrolamellar Cancer Foundation Exec Dir Friends of Cancer Research Exec Dir LAM Foundation Exec Dir ML4 Foundation Exec Dir National Lymphedema Network Exec Dir National PKU Alliance Exec Dir National Spasmodic Dysphonia Assoc Exec Dir Natl Tay Sachs & Allied Diseases Assoc Inc Exec Dir Organic Acidemia Assoc Exec Dir Oxalosis & Hyperoxaluria Foundation Exec Dir PRISMS Inc Exec Dir PSC Partners Seeking a Cure Exec Dir Platelet Disorder Support Association Exec Dir Rare Trait Hope Fund Exec Dir TargetCancer Foundation Exec Dir The Oley Foundation Exec Dir United Leukodystrophy Foundation Exec Dir VHL Alliance Exec Dir Aegerion Pharmaceuticals Exec Dir Alpha 1 Foundation Exec Dir Coalition for Healthcare Communication Exec Dir Congenital Hyperinsulinism International Exec Dir ML4 Foundation Exec Dir Myotonic Dystrophy Foundation Exec Dir National PKU Alliance Exec Dir National Tay Sachs Assn & Allied Diseases Exec Dir Novartis Pharmaceuticals Corp Exec Dir Oxalosis & Hyperoxaluria Foundation Exec Dir Rett Syndrome Research Trust Exec Dir TargetCancer Foundation Exec Dir UBC Exec Asst American Multiple Endocrine Neoplasia Support EVP & Managing Dir Patient Access Solutions TMS Health A Xerox Company Events Svcs Administrator HBA Entrepreneur in Residence Third Rock Ventures Entrepreneur in Residence Third Rock Ventures Emeritus Board The LAM Foundation EIR Purdue Foundry Purdue University EIR Purdue Foundry Purdue University Editor Pink Sheet & Pink Sheet Daily Editor RealWorldHealthCare.org Early Diagnosis Campaign Mgr Pulmonary Hypertension Association DoHead Healthcare Investment Banking Cowen Group Div VP Enterprise Specialty Walgreens Dir Youth Services Mid Atlantic Reg Huntingtons Disease Youth Organization Dir Support Groups Cushings Support & Research Foundation Dir Strategic Planning & Program Ops NCATS NIH Dir Strategic Partnerships Innomar Strategies an AmerisourceBergen Co Dir Strategic Initiaties FasterCures Dir Stakeholder Management Clinical Trials Transformation Initiative Dir Service Partnership Theorem Clinical Research Inc Dir Research & Advocacy Hemophilia Federation of America Dir Reimbursement Strategy & Tactics Xcenda a Part of AmerisourceBergen Dir Regulatory Affairs & Site Head KOP CSL Behring Dir Regulatory Affairs & Site Head KOP CSL Behring Dir Regulatory Affairs Horizon Pharma Dir Regulatory Affairs BioMarin Dir Regulatory Affairs Fennec Pharmaceuticals Dir Regulatory Affairs Lundbeck LLC Dir Regulatory Affairs ProMetic Biotherapeutics Dir Regulatory Affairs Teva Pharmaceutical Dir Regulatory Genentech Dir Rare Genetic Disease Mktg Agios Pharmaceuticals Dir Rare Disease Commercial Dev Pfizer Dir Rare Disease Commercial Dev Pfizer Dir Rare Disease Bristol Myers Squibb Dir Programs & Outreach American Brain Tumor Association Dir Program Dev TMS Health A Xerox Company Dir Professional Affairs & Stakeholder Engage FDA Dir Professional Affairs & Stakeholder Engage FDA Dir Prof & Medical Programs Cure HHT Dir Product Mktg Red Arrow Labs Dir Product Mgmt Accredo Dir PRO ICON Dir PreClinical Sciences Prometic Biotherapeutics Dir PPD Consulting PPD Dir Polcy & Research PhRMA Dir Payer Strategy Aegerion Dir Patient Svcs Retrophin Inc Dir Patient Resources Clin & Translational National Institutes of Health Dir Patient Resources Stealth BioTherapeutics Dir Patient Resources Stealth BioTherapeutics Dir Patient Advocacy Genzyme a Sanofi Company Dir Patient Advocacy Genzyme a Sanofi Company Dir Patient Advocacy Retrophin Dir Orphan Products Dev Ofc Food & Drug Admin Dir Orphan Products Dev Food & Drug Administration Dir OPL Bristol Myers Squibb Dir Operations Lash Group a part of AmerisourceBergen Dir Operations Patagonia Pharmaceuticals LLC Dir Operations Lash Group a part of AmerisourceBergen Dir Operations Patagonia Pharmaceuticals LLC Dir Office of Orphan Products Dev FDA Dir Off Rare Disease Research ORDR NCATS National Institutes of Health Dir of Outreach & Advocacy MitoAction Dir of Membership National Organization for Rare Disorders Dir of Membership National Organization for Rare Disorders Dir North America Mktg Sobi Inc Dir new Product Planning Teva Pharmaceuticals Dir Natl Accts Walgreens Dir Natl Accts ZappRx Dir Medical Marketing Clementia Pharmaceuticals Inc Dir Marketing Xcenda Xcenda part of AmerisourceBergen Dir Marketing Ipsen Biopharmaceuticals Inc Dir Manufacturer Relations BDI Pharma Dir Manufacturer Relations BDI Pharma Dir Managed Mkts Gene Therapy GlaxoSmithKline Dir Initiatives Sanford Research Dir Industry Relations Diplomat Specialty Pharmacy Dir Health Professional Liaison Program US Food & Drug Admin Dir Govt Relations & Advocacy St Baldricks Foundation Dir Govt Affairs & Public Policy Vertex Pharmaceuticals Inc Dir Govt Affairs & Public Policy Vertex Pharmaceuticals Inc Dir Govt Affairs XOMA LTD Dir Global Research Dev International FOP Association Dir Global Publications Aegerion Pharmaceuticals Dir Global Pricing & Reimbursement Alexion Pharmaceuticals Dir Global Policy Pfizer Dir Global Patient Advocacy Genzyme a Sanofi Company Dir Global Patient Advocacy Raptor Pharmaceuticals Dir Global Evidence Value Dev Genzyme a Sanofi Company Dir Global Commercialization Bristol Myers Squibb Dir Foundation Relationships Rare Cancer Research Foundation Dir Family Empowerment International Rett Syndrome Foundation Dir Extramural Research Program ORDR NCATS National Institutes of Health Dir Extramural Research Program ORDR NCATS National Institutes of Health Dir Early Stage Commercialization & Advocacy Upsher-Smith Laboratories Dir Early Access Programs LINK Healthcare Dir Div Pediatric & Maternal Health CDER FDA Dir Div Pediatric & Maternal Health CDER FDA Dir Div Clin Eval & Pharmacology Toxicology FDA Dir Dev National Organization for Rare Disorders Dir Dev Scleroderma Research Foundation Dir Dev NORD Dir Ctr Devices & Radiological Health US Food and Drug Admin Dir Corp Communications Genzyme a Sanofi Company Dir Communications Melanoma Research Foundation Dir Communications Rare Cancer Research Foundation RCRF Dir Clinical Research Amicus Therapeutics Dir Clinical Operations & Dev Sage Therapeutics Dir Client Relations Red Arrow Labs Dir Business Dev TrialCard Dir Bus Dev Cardinal Health Specialty Pharmacy Dir Bus Dev Covance Market Access Services Inc Dir Bus Dev Dohmen Life Science Services Dir Bus Dev Target Health Inc Dir Bus Dev The Patient Experience Project Dir Bus Dev UBC Dir Bus Dev AmerisourceBergen Dir Bus Dev Cote Orphan LLC Dir Bus Dev Patient Experience Project Dir Bus Dev Target Health Inc Dir Biochemistry INTEGRAL Center of Studies Dir Alliance Dev Alexion Pharmaceuticals Dir Alliance Dev Alexion Pharmaceuticals Dir Advocacy Incyte Corporation Dir Advocacy Incyte Corporation Dir Advisory Committee Program CBER FDA Dir Brookside Capital LLC Dir FDA Dir Grunenthal USA Dir Hyman Phelps & McNamara PC Dir Korea NIH Dir LAL Solace Dir Myocarditis Foundation Dir Neurolipid Research Foundation Dir Pennside Partners Ltd Dir BioMarin Dir FDA Dir GlaxoSmithKline Dir Hyman Phelps & McNamara PC Dir NORD & Calcium Dir Neurolipid Research Foundation Dev Mgr National Organization for Rare Disorders Dev Coordinator National Organization for Rare Disorders Dev Coordinator National Organization for Rare Disorders Dev & Membership Dir Vestibular Disorders Assoc VEDA Deputy Exec Dir Association Clinical Research Professionals Deputy Dir Stakeholder Engagement PCORI Deputy Dir Science Ops FDA Deputy Dir Science Ops FDA Deputy Dir NCATS National Institutes of Health Deputy Dir US Food and Drug Admin Deputy Dir MPN Research Foundation CSO XOMA CPO Beacon Corporate Dir Research & Communications Frontline Medical Communications Inc Corp Communications Specialist Alexion Pharmaceuticals Corp Communications Specialist Alexion Pharmaceuticals Corp Communications Vertex Coord Research & Intl Affairs Prader Willi Syndrome Assoc Coord Research & Intl Affairs Prader Willi Syndrome Assoc COO/Dir Communications Hermansky Pudlak Syndrome inc COO National Organization for Rare Disorders COO Neuraltus Pharmaceuticals Inc COO ZappRx Inc COO Lumos Pharma COO National Organization for Rare Disorder NORD Content Lead DIA Consumer Safety Officer Food Drug Administration Consultant Regulatory Policy Group Genentech Consultant Regulatory Policy Group Genentech Consultant BioPontis Alliance for Rare Diseases Consultant Genzyme A Sanofi Company Consultant Genzyme A Sanofi Company Communications Dir ECD Global Alliance Committee Federal Legislation MPS Society Commercial Ops BioMarin Pharmaceutical Inc Co-Founder & Exec Dir Rare & Undiagnosed Network RUN CoFounder & CEO Cellworks Group Co-Founder BioPontis Alliance for Rare Diseases CoFounder Target Health Inc CMO & Exec VP Research & Dev Horizon Pharma Inc Clinical Trial Mgr Alnylam Pharmaceuticals Clinical Team Leader Thoracic Oncology FDA Clinical Team Leader CDER FDA Clinical Science Specialist BioMarin Pharmaceutical Clinical Science Officer Genzyme Corp Clinical Science Assoc Gaucher & MPS Genzyme Canada Clinical Science Assoc Horizon Pharma Clinical Science Assoc Genzyme Canada Clinical Research Coordinator Parkview Research Center Clinical Professor Rheumatology University of Washington Clinical Nurse Coordinator Dohmen Life Science Services Clinical Asst Professor Medicine NYU Med Sch & Ctr for CV Prevention Chief Technology Officer eMgine HealthLogics Chief Secretariat Intl Relations JPA NPO ASrid Chief Scientific Officer Tuberous Sclerosis Alliance Chief Scientific Officer Pfizer Chief Scientific Officer Renavatio Healthcare Communications Chief Scientific Officer TS Alliance Chief Science Officer Dohmen Life Science Services Chief Science Officer International Rett Syndrome Foundation Chief Science officer Genzyme Chief Medical Officer Achillion Pharmaceuticals Chief Medical Officer Catabasis Pharmaceuticals Inc Chief Medical Officer Clementia Pharmaceuticals Inc Chief Medical Officer BioMarin Chief Medical Officer Celsus Therapeutic Plc Chief Medical Officer Clementia Pharmaceuticals Inc Chief Medical Officer Corbus Pharmaceuticals Inc Chief Genetics & Metabolism Childrens National Medical Ctr Chief Genetics & Metabolism Childrens National Medical Ctr Chief External Affairs & Communications Off Intellia Therapeutics Chief Commercial Officer Achillion Pharmaceuticals Inc Chief Commercial Officer BioBlast Pharma Chief Commercial Officer Clementia Pharmaceuticals Inc Chief Clinical Review Branch FDA Chief Clinical Research Support Office National Center of Neurology & Psychiatry Chief Bus Officer Strongbridge Biopharma Chief Bus Officer Applied Genetic Technologies Corp Chapter Care Mgt HBA Chairman Board CARF Cicatricial Alopecia Research Foundatn Chairman Board CARF Cicatricial Alopecia Research Foundatn Chairman & CEO Celgene Chair Healthcare Initiatives Turner Syndrome Foundation Inc CFO BDI Pharma Inc Certified Peer Health Coach Intl Pemphigus & Pemphigoid Foundation Certified Peer Health Coach Intl Pemphigus & Pemphigoid Foundation CER Program Officer PCORI CEO Aplastic Anemia & MDS Intl Foundation CEO Beacon CEO Cutaneous Lymphoma Foundation CEO EURORDIS CEO Escala Therapeutics CEO HealthChart LLC CEO InformedDNA CEO National Health Council CEO NephCure Kidney International CEO PKD Foundation CEO PSC Partners Seeking a Cure CEO Public Health Alliance for Clinical Trials CEO QOL Medical LLC CEO Worldwide Syringomyelia & Chiari Task Force CEO Aureus Health Services CEO BioPontis Alliance for Rare Diseases CEO Duchenne Alliance CEO FORMA Therapeutics CEO HemoShear Think Human CEO Huntingtons Disease Society of America CEO Orphan Technologies CEO PSC Partners Seeking a Cure CEO Public Health Alliance for Clinical Trials CEO SAVE JON Inc CEO Sarcoma Foundation of America CEO ZappRx CCO Clementia CCO Prosensa CCO Zafgen CBO Cydan Development Inc CBO Cytonet GmbH & Co KG Case Mgr Genzyme a Sanofi Company Bus Partner Deallus Consulting Bus Dev Mgr Cote Orphan LLC Bus Dev Mgr Retrophin Inc Bus Dev Dir PSI Bus Dev Dir Quintiles Bus Dev Biologics Codexis Bus Dev Assoc Rho Bus Dev Assoc Rho Bus Dev Cote Orphan LLC Bus Dev Premier Research Group Ltd Bus Analyst 1798 Consultants BU Public Affairs Pfizer Board Member Curing Retinal Blindness Foundation Board Member Dravet Syndrome Foundation Board Member PSC Partners Seeking a Cure Board Member Spastic Paraplegia Foundation Board Member APS Type 1 Foundation Board Member Active Minds Board Member Batten Disease Support & Research Assoc Board Member PSC Partners Seeking a Cure Board Member Phelan McDermid Syndrome Foundation Board Directors BioPontis Alliance for Rare Diseases Board Dir American Multiple Endocrine Neoplasia Support Board Dir Cystinosis Research Network Board Chair SCAD Alliance BA / Process Engineering Group Lead Digital Infuzion Inc Awareness Program Mgr International Pemphigus Pemphigoid Foundation AVP Rare Disease Commercial Dev Pfizer AVP Rare Disease Commercial Dev Pfizer Attorney Independent Asst Professor Bioinformatics & Medicine Vanderbilt University Medical Center Asst Professor Amrita Institute of Medical Sciences Asst Dir Programs The Life Raft Group Associate Mark Krueger & Associates Inc Associate Mark Krueger & Associates Inc Assoc VP Global Clinical Collaborations Lilly & Co Inc Assoc Vice Chancellor Innovation & Bus Dev Univ Massachusetts Medical School Assoc Scientist Med Comm Genentech Assoc Professor Medicine Columbia University Medical Center Assoc Professor Univ Alabama at Birmingham Assoc Patient Advocacy Retrophin Assoc Partner Client Service Dir Accounts CDM New York Assoc Mgr Market Analysis & Strategy Genentech Assoc Mgr UBC Pharma Assoc Exec Dir Alpha 1 Foundation Assoc Dir US Reg Affairs Strategy & Policy Lundbeck Assoc Dir Translational Medicine FDA Assoc Dir State Policy National Organization for Rare Disorders Assoc Dir Safety CDER FDA Assoc Dir Research Programs Foundation For Prader Willi Research Assoc Dir Research Programs Foundation For Prader Willi Research Assoc Dir Research FDA Assoc Dir Regulatory Affairs Stealth BioTherapeutics Assoc Dir Public Policy National Organization for Rare Disorders Assoc Dir Public Policy National Organization for Rare Disorders Assoc Dir Product Communications Intercept Pharmaceuticals Assoc Dir Policy FDA Assoc Dir Policy FDA Assoc Dir Patient Services BioMarin Assoc Dir Patient Services Ipsen Biopharmaceuticals Inc Assoc Dir Patient & Physician Svcs UBC Assoc Dir Mktg & Community Relations National Organization for Rare Disorders Assoc Dir Global Project Mgmt inVentiv Health Clinical Assoc Dir FDA Week Inside Washington Publishers Assoc Dir Events National Organization for Rare Disorders Assoc Dir Client Services PharmApprove Assoc Dir Alliance Dev Biogen Assoc Dir Advocacy & Policy CV & GDD Bristol Myers Squibb Assoc Dir Bristol Myers Squibb Assoc Dir National Cancer Institute Assoc Dir Biogen Idec Assoc Dir Janssen R&D US Assoc Dir Takeda Pharmaceuticals Assoc Dir Vertex Pharmaceuticals Inc Assoc Bus Dev Dir Quintiles Assoc Hyman Phelps & McNamara PC Assistant Professor University of Rochester Assist Research Professor Childrens National Medical Center Alpha 1 Foundation Alpha-1 Foundation Alliance Dir WW Bus Dev GSK Advocate Independent Advocacy Dir Board Member Glut1 Deficiency Foundation Advocacy Dir Hereditary Neuropathy Foundation Advisor Clementia Pharmaceuticals Inc Advisor Friedreichs Ataxia Research Alliance Admin Mgr BDSRA Active Professor Emeritus Pediatrics Pediatrics Univ Michigan Health System Acting Dir Science CDRH FDA Acting Assoc Dir Rare Diseases Program CDER FDA Acting 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